Living With Cancer

Speaker 1 0:02

Welcome , welcome , welcome . You're tuning into the Lead to Excel podcast , the hub where science meets leadership and transformation begins . I'm your host , maureen Cheyanna , founder of the Mindsite Academy , a trailblazer in the world of neuroleadership , I'm an executive neurocoach , leadership transformer and a neuroscience enthusiast , dedicated to empowering leaders , entrepreneurs and changemakers like you . Every week , we delve into the heart of neuroscience to discover how you can unleash your potential , master your brain , manage emotions yours and others alter behaviors and exceed expectations . It's time to elevate your leadership , to excel and so , hire , let's dive right in . Hello and welcome . Back to another episode of Lead to Excel podcast , and today I have a dear friend and sister with me , and I'm actually really excited about this episode . It's one that everyone needs to listen to and one that I would say everyone listening share , share , share , share , share . You will get to know why where we start this podcast . So , denise , it's a pleasure and it's an honor to have you on the podcast today . Thanks so much for saying yes .

Speaker 2 1:37

Thank you , Maureen . It's very nice to be here . I'm not very familiar with podcasts , but one of the good things about it is I appreciate this . I am humbled to be asked to do this . I always say to people life is not a right . So I don't think this is a right , it's a privilege . So thank you for the privilege .

Speaker 1 2:01

Thank you , thank you , thank you . So , denise , I'm going to let's start by introducing you up . If I will start by saying that Denise and I went secondary school together , so we're secondary school sisters , so we go back a long , long way and it's been great to reconnect again , you know , after so many years apart . So , denise , can you tell us a bit about your background ? What you do ? I know one of the things that we love talking about as well is our passion for education , so if you just tell us a bit about you , that would be awesome .

Speaker 2 2:37

Thank you . So my name is Denise Edo . I am of Nigerian heritage . I grew up in Nigeria , I was born in Nigeria . I met Maureen in Nigeria in our class in Lagos , so everything about me is very , very Nigerian .

Speaker 2 2:58

I live in the UK now , but different things and different journeys have taken me a long way . So who am I ? I am an educationist . So I am , and I am proudly a teacher . That is who I am and that's what I always say to people . Every other accolade you get on the teaching career is as a result of being a teacher .

Speaker 2 3:24

But you grow , go up the ladder and get other skills that take you to different places . What else have I got ? I am the CEO of a foundation , and that is as a result of living with cancer . So , to be able to marry my life and make things meaningful because life should be meaningful , I've put the two together and I now work on both , both . I have two sets of skill sets that I think are important in changing the positive , in making us understand that our positive mindsets are key in anything we do .

Speaker 2 4:07

In that light , I will say what's my education background ? What am I interested in ? I'm very . I'm into the education more than my cancer is my charity . My education is my career , is my profession . I am very involved in consultancy across not just Nigeria but very many places In fact . I've just been told yesterday that I may have a project in Tanzania and I will go and that's going to fascinate you when you get to really know who I am . That what does she mean ? She's going to Tanzania , but I'm going to Tanzania and I am looking forward to it . Anything to educate the children of this generation and give them the tools to excel is central to whoever Dennis Uzoma at your is , and that's it .

Speaker 1 4:59

Dennis , your name is Uzoma . That is my new middle name as well . I didn't know that . I didn't know that . That is amazing , that is great . So we had namesakes . That's so , that's fantastic .

Speaker 1 5:12

See how like those Exactly . I actually didn't know that , so that's fantastic . Thank you so much , denise . I think you know one of the things that I would say is that you are just an incredible woman in what you do and it's you know how you mentioned that you're living with cancer and you're truly living with it , in the sense of even how you go through life and everything you do . So I just want us to kind of go back a bit . So you started off , as you know well , started off as teaching . What did you study at uni ?

Speaker 2 5:49

Okay . So that's interesting . I didn't . I didn't want to talk too much , that's why I didn't go there .

Speaker 2 5:54

I went to university in a town in Nigeria called Sokoto . Now , my degree is very funny . My degree is University of Sokoto , but the university today is called Usmandam Fodio University . So I was the last graduating set under the University of Sokoto name . I studied business management , majoring in finance .

Speaker 2 6:22

I went on , I think I would like to say now , to be honest , hands out , I get bored . I went on to do a master's in advanced information technology here in the UK and my mom said you know what ? Why don't you just go and be a teacher so you could have time to spend with your children , because your life just seems to be about them . So I decided okay , let me go and try this teaching thing . And the first day I walked in to a classroom to observe , I heard a child swear at a teacher and I flew to the door . I was at the back and I ran to the door . I was like , oh my goodness , what's going on here and the way she handled it .

Speaker 2 7:07

I was not happy and I just said to myself now , if this is what it is , I want to be a teacher because children have to be taught the skill sets to be successful in life , and we don't we do not supposed to mother call them , but rather teach them to be good at what they have . So find their strengths and use it . And that's how I enjoyed and became a teacher . I rose all through the ranks till I became a head of schools , which means I was leading a group of schools , Two different sets , one in Lagos , one in Mina but the schools were like five different schools with three different curriculums . In that time I was , I had a headache and ended up finding myself with cancer . So I live with cancer . I want to stop because this is the education part .

Speaker 1 8:04

Yeah , yeah , Thank you very much for that . So you then discovered how long ago did you did ? Was the diagnosis for cancer made ? How long ago has this been ?

Speaker 2 8:54

We're in year eight , so I was seven years last August when I was in year eight .

Speaker 1 9:01

Right , okay , thank you very much . So let's now talk about your journey , you know , living with cancer and what you found out , because one of the things that I just find incredible is how much awareness you're raising about living with cancer and actually the diagnosis . So if you kind of talk us through what cancer is this ? And if you give us your journey of you know a bit of what happened , how it was diagnosed and how you came to , I think what I'm interested in is how did you get to the point of you know it's almost like accepting that okay , this is what it is and now this is what I'm going to do to give back , to help . So I'm looking at more your mind what happened when it was diagnosed and how was that journey for you ?

Speaker 2 9:57

Okay . So I'm going to start and at a point I'm going to stop , so that you can rephrase it . And I'm going . When I get to that point , I'm going to tell you why I had to stop . Okay , Okay , yeah .

Speaker 1 10:07

But let's go .

Speaker 2 10:09

So I was working , like I said , as heading a group of schools and I enjoy travelling

Diagnosis and Treatment of Brain Cancer

Speaker 2 10:16

at that time . Nigeria is very safe , so I just used to get on the train or get on the bus , train and flights all around Nigeria as I did , and I kept having a persistent headache . I think I had a headache I would . I got to a point where I was taking a very strong drug called kathagot for the headache and I couldn't understand and I kept saying why do I have the headache ? At a point we got tested with my hair ears because they used to hurt . They said there was nothing wrong with my ears . Of course there was nothing wrong with my ears because by the time I got diagnosed it was a different journey . I had this headache . It wasn't going .

Speaker 2 11:01

So in the end I went and had been to six different hospitals Now six very good hospitals . So I'm not going to sit here and say they were not good or they didn't know their job , because even when I took the same diagnosis to the UK , I still had a similar reaction . I did it and then I was fortunate . A family friend of mine said come , let's go and see this doctor . He's in town now let's see what he has to say . He's part of a hospital .

Speaker 1 11:30

So I went and took my bills and asked in Nigeria .

Speaker 2 11:36

And he said to me Denise , look , everything about you is fine . Now this is the same conversation six hospitals have told me . So you know you hold on , even though your instincts telling you is not . And please bear in mind I didn't say this , but my mum had died of cancer ten months before .

Speaker 2 11:56

So my mum died before but , I've been diagnosed with cancer ten months after . But I somehow knew and I'm going to talk about my mum a lot because she influences a lot of my story today so I said okay , fine , and then did the man did the test , everything . He said there's nothing wrong . But you know what ? We have an MRI scan in machine that has been brought into the hospital . I would like you to do an MRI scan to your brain . If that is clear , then I can guarantee you I'm not going ahead with anything else . You are fine . Of course it wasn't clear .

Speaker 2 12:36

As soon as I walked in there the guy halfway through they came in and said we need to put they don't use contrast , they use word die Something different into your heart . And they start to explain all this . I can't hear because I have an excruciating headache and , honestly , to lie on that bed was just not my cup of tea for that deep . And then I said what's the problem ? And they said well , we can see something . You see , they want to tell me what you can see . I said okay , and they did all the scans and they said we can see a few tumours . I think that was the word . That's not the word they used .

Speaker 2 13:18

They used the different word the best tumours , but at the time that was not the word they used . Okay , and as soon as I walked away I knew I had a big problem . In summertime I work in Nigeria but I live in the UK , so I had an expat in contract . I was coming home for summer . I said to my youngest daughter I said well , are you coming to England with me ? She said no , I'm not coming with you , just buy my stuff here . And she gave me her shopping list . I thought , okay , now that we've got a problem , now let's see . I said I'll get my results the next day .

Speaker 2 13:54

And I walked in to pick up the thing and he had the disk of the pictures and my scan and he report . And I opened the envelope and it said cancer . And it had this list of different types of cancers . Because , you know , once they now say cancer , then it has to be . They have to say , because they've actually done a scan , what do they think it could be , what kind of cancers ? And it had different kinds of cancers . And at the bottom , somewhere along it , I scanned and I saw three months left , three months to live , and I thought myself alright , I'm coming , it's alright now .

Speaker 2 14:36

I sent my friends . I got home and I was still trying to get my leave allowance from my office , which I hadn't got for my ticket . I just called a few of my friends and I said you know , I need to get out of Nigeria now . I just got back home and I got back to England and two days later , I feel . My friends immediately put the money together and my ticket was gotten that night and I flew out the following morning .

Speaker 2 15:01

Now that I knew what was wrong with me . You have to understand . You cannot allow the airline to know that they're carrying the passenger like this . So I didn't even go there and I started my journey in the UK . Even the first day I went in to see the consultant in A&E because I was referred by my GP at this point now , to .

Speaker 2 15:22

A&E . As soon as I got in to see my consultant at my A&E , he said no , no , just give her some hairpink and she's fine . You see , this meant everybody could say I met her and he said no , I don't think so . She doesn't sound like somebody that doesn't know that she's ill , there's something wrong , and she's trying to say find it . And then he said okay , just do a CT scan . Now I need an MRI scan .

Speaker 2 15:55

He said let's do a CT scan . Anyway , they did the whole thing and I was trying to come before I left the room to come down to the reception where they'd will me back , they will me up to take the scan and then they will me back . They told them to take me back up again and now they want an MRI . I didn't even realize that during that period they had contacted immediately . It's a group of hospitals that do brain tumors and they had contacted them in the brain tumors .

Speaker 2 16:33

It's called Southeast London . It's a group that they are the ones that every person that has a tumor in the UK in this group are under this clinic , and it's not just about London .

Speaker 1 16:48

At that point . Why did they contact them ?

Speaker 2 16:55

Nobody saw that there was a problem .

Speaker 1 16:58

They were already suspecting .

Speaker 2 17:01

So they now needed to confirm whether what they were seeing was exactly correct , because the person was to do a CT scan . But you know , you will see some part . They saw that they were like no . So they said , go and do a proper MRI and I got admitted that day . I got admitted because apparently my brain was full of liquid at that time . I think I call it water , I don't know what it's called . I always say I'm a medical doctor , I'm a teacher , so just bear with me on that one , so let's not become medical because we have no cancer .

Speaker 2 17:39

And then I did that and as soon as I did that they said they put me in the bed and that was it . They now have to get the swelling down . But I was then put in straight into brain surgery within . It was supposed to be the following week but there was a mix-up in the hospital and then it was done two weeks later and I had a brain scan , A brain surgery . Very sad , very good . But it was the day before my daughter's birthday . I left her in Nigeria and went off telling her how she used to , Not knowing I would not see her soon . I got back , had the surgery .

Speaker 2 18:21

It was very funny because on the day I went for the surgery I was in a high and I think I want to say surgeries , do not throw me . So I always tell people don't be scared of it . And then you tend to be okay . But in the same way , my pressure I don't have any spills . One of them is always very low . It's always below the norm for a normal person and I've always known that it's the same way . I've always known my BP is always low , it's not high . But now it's not like that , it's changed . That's how we started .

Speaker 2 18:56

And then I started my cancer journey , Made it . After that they had the first brain surgery . As they were finishing the first brain surgery , they had found another doctor , another consultant I don't know if I want to name their names , but they're great consultants in the UK . The second one was gave me from his budget because I now had to have gamma knife surgery and that consultant was a research consultant . So he had a budget and the budget allowed me to have gamma knife surgery . We now removed the other surrounding tumors because at that point they knew I had four tumors . I had four tumors in the brain . So with me now learning about cancer , I realized that if you had one tumor in your brain , you do not have . You may or may not have cancer . If you have multiple tumors in your brain , you do have cancer . It's not what comes that you have .

Speaker 1 19:50

Yeah , yeah .

Speaker 2 19:53

And they came back and said it was reading breast cancer . It was what it was breast cancer , oh it was primarily breast cancer . Okay , okay , it's a primary . I have what you call metastatic breast cancer , breast cancer , yeah . Which means it's breast cancer that has moved to the brain , yeah , so all the tumors are in the brain .

Speaker 2 20:15

Yeah , after that I had to have the gamma knife surgery and then I was given some time while they were still trying to work out . I had to do all the other tests PET scan to check how it spread all over my organs . What was it ? How did it get there ? I'm not sure anybody can really answer that now , but at least I'm able to find drugs that allow me life .

Speaker 2 20:42

I then have . So since then I have had three . I think they are called cranotonomies . That means three cuts in the brain . I have had two gamma knife surgeries , so between those two they have removed nine tumors from my brain . I have changed the therapy drugs that continue to shrink or remove other tumors and stop others from growing . Now I will . When I say I some person living with cancer , that statement means the person lives with cancer and they will not , they will live , they will die living with cancer .

Speaker 2 21:31

So a lot of people hear it think , oh , you mean it will get it ? No , no , no . It's the one cancer category of people that the disease does not is never cured , ever where it goes once . They always have a drug to keep you . They will . The side effects of the drug , however , is known in the cancer space to be the real reason why people struggle , because the challenge of drugs is a lot . Let me stop here .

Speaker 1 22:09

Okay , Okay , Thanks so so much . Sorry To give you something else to think about . Okay , no , thank you so much for really sharing that , and I think the question I was going to ask was so is the tumors ? Do they keep growing back ? Is that why you keep having the operation ? And also because when you say you're living with it , is it that more tumors keep coming ? What's happening there ?

Speaker 2 22:40

Because the tumors keep going back . Okay , so in the process of having the surgery , as there's a site , the original site is active . So I have an active tumor site and there's nothing they can do about it . So I've had three cuts . I've had three cuts , I have one more chance at a gamma knife . I don't know how many more chances I will get on a proanotomy if it's at the same spot , because it's the same cut point , that is , it's still the same point . It's not moved . So I'm not sure yet how that goes , but as of my results as of yesterday , that's one that has been and it's just not moving . It's just it's respected , as far as I say . I would say like this it's respecting itself Good , and it's allowing me to tell it just stay where you are , yeah , and don't make anything worse .

Speaker 1 23:41

I just don't need it , yeah , good , and I hope , by God's grace , it will stay like that , yeah Right . So , and Denise , with all this , you know this experience . In fact , the interesting thing is you were told three months in Nigeria , but you know we thank God that you're still here to give the , to give your story almost eight years in . How has that journey been for you mentally ? And you know , if I come back to that early stage , what were the emotions you were going through and how did you navigate through it ? Thank , you .

Speaker 2 24:18

Now , that's where we are . That's now the discussion . So one of the things I'll say very quickly is that when I got , I have a spiritual relationship , I believe in God , I trust God and I have my own spiritual lifestyle . So I thought to myself , well , how am I going to navigate this ? Because I knew now I had multiple tumors . So one day I sat in my brother's house and I thought I was sitting there because I couldn't be on my own . I would fall off , yeah , and I thought , what is this all about ? So I prayed and I said , father , if this disease , if this illness is going to kill me quickly , it's going to kill me in a space of maybe a year . I don't want it . Let me just go home quietly .

Speaker 2 25:20

The disease is called cancer and I accept . My mother just died of cancer . I did not believe that my children had

Navigating Cancer

Speaker 2 25:27

a right to watch what I had to watch when my mom died , and my mom died as an elderly person . I am quite young and I had a child in secondary school from one . So just one , yeah , and that makes a difference . Yeah , and I was at a key stage , key stage for your seven . So you have to be very , very mindful . You have to look at where your child is , and that was what I thought I said . However , if I am going to live , if the decision is for me to live and this is my prayer request let me be useful to society and let me be able to work for people with cancer and let my life be used for that .

Speaker 2 26:14

And I left , and one day , in my chemo chair , I had some guests , because we used to be allowed to go have family and friends , and I used the opportunity to start encouraging people who had heard about cancer , who I knew could have a voice or help people . If they wanted , they could visit me on my chemo chair . We have a chat , they could take photos , because a lot of people do not understand chemo , so a lot of people think it's very complex . We have to be admitted , we don't know where we're going . We go in there , we have our chemo , we walk out of there . We don't sleep there , they're not well , they're not going to do chemo . So I want that notion . We waste now . If anybody is going to have chemo , you don't sleep there . They will not even give you chemo if you are not well , so don't worry about it . Chemo is not . Don't worry about chemo . It's not scary , it shouldn't be . It's just , it's like a drip and that's it .

Speaker 2 27:11

So I started to use that to talk about it , and one day they were sitting there and said you know what , denise ? You've always wanted a foundation . Why don't you use your life to start this foundation ? And that's how I started my foundation . My commode is actually my grandfather's name . That's my mom's maiden name . My grandmother died of cancer .

Speaker 2 27:34

My mother died of cancer .

Speaker 1 27:36

What cancer did your mother die of ?

Speaker 2 27:40

My one died . No , I don't know the order , but one died with . Both of them died of leukemia .

Speaker 1 27:48

It's the type of one died with non-Hodgkins something like that .

Speaker 2 27:53

But I don't have either of that . That's not what I had . I have , it's aesthetic breast cancer . So after that , now I have to be very honest with you . The journey of a cancer person person , short term or long term is very complex .

Speaker 1 28:15

What do ?

Speaker 2 28:15

you mean by that ? If all the components are not provided for , the survival rate of a cancer patient is almost non-lantrually , is not existent , and this is what I'm trying to say . I am very dependent on all the service provisions that a cancer patient requires . The biggest challenge is our mental health , and that's one part that people do not realize . If that is wrong , no matter how hard you try , something will trigger and you won't be able to fight anymore .

Speaker 1 28:53

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Speaker 2 30:10

That's why I wanted to list them , because then you will see the relationship . So we've got the mental health , we've got our physical being . Cancer treatment comes with pain . So when there's pain , you know it will go into your brain , no matter how hard you try to not recognize that it is going to be there . You are living a very normal life before you got sick . All of a sudden , your world's crashed . Your emotional well-being is crashed . You are living a normal life , you could pay your bills , your financial well-being has crashed . How are you going to navigate ? That is then you start to think about everything . So that's why mental is an encompassment of all what I've just mentioned . You can't separate them . So I wouldn't want anybody to separate them .

Speaker 2 31:11

So one of the first things I realized as I was journeying I have

Supporting Cancer Patients

Speaker 2 31:17

come to realize that when I'm in pain or I'm tired , I will cry . I don't need , I want things . I've in fact used this to when you're supporting a cancer patient . One thing people say is it is well . No , it's not well , so please don't take it . Or I understand , no , you don't understand , because you're not sitting in the chair . That's right . So vocabulary needs to change globally . You need to understand that the pain , the experience , the way we feel , the way we move , the way we think has changed and we don't know how to navigate . So when I say we don't , we really don't . We are now dependent on trusting people to respect our space . What do I mean by that ? You talked about you're asking me mental health . I depend on the counsellor . In fact , I had to cancel my counsellors appointment yesterday because I am not well for tomorrow , for next week . Why do I have to do that ? Because I have a lot of things I need to get off my head now . We've just gone through Christmas and if I don't sort those things out , I will not navigate to 2024 . And I'm one person I beg a lot of cancer patients take your counselling sessions seriously , source for it and get it , because if you don't get it , you wouldn't know what to do .

Speaker 2 32:50

I got to a point where , at the point of five years , I didn't think I was going to cross the line , not because anybody said anything , not because of anything , but statistically I'm not supposed to get past five years because I have metastatic breast cancer . So we have to come to terms of what you have . You can't , don't live in a box and lie about it . Deal with it . I don't want you to lie about it . If you got the disease , face your head on and seek for the help you require . Please don't , don't , don't , don't , don't do that , because it's not going to help you . And I had to go through that and understand where I was coming from .

Speaker 2 33:35

When I got through that period was COVID time . I was just spiraling down . It said hello , denise , I will cry , what's going on ? I didn't know how was I going . I didn't . I couldn't understand . But one thing I only knew I did right was I didn't want my child , my youngest child , to know how I was broken . My two other children are married and they were not around , so I only had her . It was COVID . Gradually I have family . They come , they go , and then I got the counselor and the best thing that's ever happened to me was she helped me to put all this finances , mental health , emotional wellbeing , physical wellbeing it's boxes Because you come out of one another .

Speaker 2 34:32

One's going to happen If you live with the disease , if you have the disease . Some people have cancer and they get cured and they move on and then you start a life again and you go for your screening every year . For anybody who has ever had cancer , I'm going to say it again , for anybody who has ever had cancer . You will always have a screening every year . Right , and once you have a screening every year , it means automatically that they're going to check . Let me tell you now , immediately , that screening is called Every part of your body that you think has cancer . Automatically . Someone has to have cancer , not because it does , but because your mentors is telling you they're going to say something and there's nothing you can do about it . So just take it like that .

Speaker 2 35:19

And it's that time of screening and scanning . I have scans three times a year , trust me , I know what it is when I go there and I just sit down and I'm like , whatever , we're going to see how it comes out , but that's one . When I was at the five-year point , I couldn't think like that . I was broken , I was shattered , I was exhausted , and I still get to that point now . So if you've got cancer or you're going through it , just find someone you trust that will not judge you , that is just willing to listen to you , not talk to you or advise you , because nobody can advise you unless they're on that chair , but at least they can listen to you and ask them what do you want me to do for you ? Yeah , not like that . Not give us what you think you are going to do for us .

Speaker 1 36:16

Yeah .

Speaker 2 36:17

Ask what would you want me to do ? Sometimes I say to people just taking a cancer patient out of their home and have a meal with them , you will be so surprised , the positive mental state you have done . You will be shocked . In Nigeria , one of the things we do in my foundation we once did , we still started it . I've never done it before . But buy food , wrap it , package it nicely and give it to some because they have to eat . There's certain things that we have to eat . We should , as a cancer patient , say we don't want to eat something . Please don't tell us well , we're supposed to eat greens , we're supposed to eat beans , we're not supposed to . No , no , no , no . Don't do that . Don't do that , please , because all you're doing is not giving us a reason to live .

Speaker 2 37:10

Yeah , because if we don't , we cannot take our medicines . And our medicines are very , very hash . Let's put things in context . Let's be honest about it . If our medicines are hash , it's because of medicines . I actually use a walking stick . I am already learning , already to understand that I may end up in a wheelchair . So am I going to sit now and say I don't know that ? No , I am already aware that it can happen . I'm not waiting to learn to . I navigate . When I go to the airport now I seek assistance . I'm no longer trying to say I'm macho , I'm going to walk . That's what my cancer laws are teaching me . There's no need doing that anymore . Just seek the help and move on . Don't , don't , don't , don't , please . Let me stop here .

Speaker 1 38:09

Oh , denise , that is so I've just been making notes . That is fantastic , and a few things you touched on that I love . The vocabulary that is used when talking to someone that has cancer is so important . And you know , coming back to that mental state , like you said , there's a lot that you're having to think about and deal with . So you know what we don't , what you don't want is the additional . You know additional things that will create more problems with mental health , and I think that's so important .

Speaker 1 38:43

One of the things you said , or two things that I would love to mention , is that come to terms with what you have . I think that's so powerful , because once you do that , it's almost like , instead of being in denial , you know in the brain there's an alignment . So this alignment with this is the reality of what's happening , and so now , with that , your brain is able to almost open up to opportunities , to things you can do . But when you're in denial , that is when there's a misalignment and then the problems start . So that's so powerful . Something else you said is what do you want me to do for you ? Wow , I think that is just great , because a lot of times , people don't know what to say , how to say it or what not to say . So I think this is just great Listening , just listen , just be there and you know , asking the question what do you want me to do ?

Speaker 1 39:40

Because you're right . A lot of times we assume we know and we do this with people . Generally , it's like you know what the other person needs because you're basing it on your own needs or what you think . But we've got to really understand that we're all different . So asking that question , because each and different cancer patients are all different , they all need different things , human beings are different and we all need different things . So just asking that question , I just thank you so much . And something else you said that I just want to reiterate again is just taking someone out , you know a person living with cancer . Just taking them out and saying , see , let's go for a meal , let's just change the environment Little things like that make a whole lot of difference . That coming to impose your thoughts about your fine oh , don't say that . Oh , that's too negative , oh , don't do that but really allowing them be , and just it's almost like creating a space for them to appreciate life instead of almost taking it away . This is called a safe space .

Speaker 2 40:49

Yes , a safe space .

Speaker 1 40:51

Yeah , yeah , no , that's really great . Thank you so much . A lot of . Even if you're not a patient , if I'm listening to you , I'm going wow , yeah , I think it's just fantastic . So , denise , now that I want to talk about your charity in terms of what it does and how I know you've touched on it a bit . You know how you support people with food and support people in different ways , but tell us a bit more about the charity , because that would help as well .

Speaker 2 41:26

Okay , my charity is called ComMove Cancer Foundation and it's an awareness foundation . We don't fundraise to help people with treatment and that is for ethical reasons . I live with the disease and I always say to people who don't understand the cancer space every person that has cancer has cancer . Long-term cancer patients are the most expensive beggars in the world , and I'm going to explain

Financial Challenges for Cancer Patients

Speaker 2 42:01

it so people don't run off with what I've said without knowing the context . Once you have cancer , you don't have access to funds . Even if you have a salary , for how long will they continue to pay ? You've got a family . You've got rent . You've got bills to pay . At a point there will be none . You've got people who have supported you in the initial stage At a point they too will stop . So the financial place of a cancer patient is not short-term , except the disease is actually treatable short-term . Therefore , anybody who lives with cancer falls into the category of the most expensive beggars in the world , because there is no country that can pay for us for all our bills for the rest of our lives . There is none . If you have a house , you will lose your house . If you have , especially if you are a young person , because you don't have the income to pay the mortgage anymore and you won't have it because you live with cancer , which means you take treatment . You are always in the hospital . You have three days off this week . You may not have three days off next week . No employer is going to employ you with those . So , with that in context , I just wanted to make sure I explain that in context . Once you've got an understanding that this is your reality , then we start to look at what common cancer does . First and foremost , our first primary goal is to create awareness , that is , ensure knowledge is out in the open space . You get the facts of cancer , different cancers . We get speakers from all over the world . Our focus primarily is low middle income countries , and I'm in Nigeria , so let's use Nigeria as most of them , but I also have speakers from the global community , depending on what we're doing . So this year is World Cancer Day .

Speaker 2 44:13

I have somebody in the organization that is into patents , and when I say patents is patents are the cheaper version of our cancer drugs . Our Cancer drugs are produced by the big seven or big five . I can't tell you how they are called . One is called big seven , one is just a five . I don't know which of the one it is , but they're the biggest pharmaceuticals and Once they produce a drug , it takes a certain number of years before it can be sold at a patent price , which is they take the Content and now make it at a cheaper price . Until that is done , you cannot access the drugs , which means that only countries , only people in developing countries , can access that drug at the rates the patent the Organization has put it . When it becomes patented , then it can be sold in low-medium income countries because the organization will now give out Provide the licenses for pharmaceuticals to now sell it .

Speaker 2 45:25

Is it different ? I actually serve as a community advisory panelist for the medicine patent pool . That is fundamentally what I'm trying to drive . That's why I agree to serve there , because if we get more patents in and and they are in the market , it helps people Access the drug .

Speaker 2 45:46

One of our biggest drugs is what they call to trust with my trust in my is taken by almost . I don't know if I pronounced it , pronounced it properly , but you take it like that . The none , the easier name of it is accepted . Almost all the best patients that have risk cancer at some point take it . Some of us live on it in In some countries it's very expensive . So if it's very expensive until it gets to patent price , you can't .

Speaker 2 46:17

I think it's now in the patent pricing group , so hopefully we should get the patent pricing out before the end of 2024 , which will automatically give a huge number of cancer patients across the world Access to that , because the World Health Organization is trying to work on Access for all access to medicines for all . But until the big organizations , that's , those big giant pharmaceuticals , agreed to release the drugs at the price , then there's nothing we can do . So that is part of my work . I am engaged in the global community on the rights of cancer patients as as as people , our Disabilities , because if you take cancer drugs for a long time , it has a knock on effect on your body . Who's going to pay for you ? Nobody wants to , nobody's interested . Okay , so maybe at this point we need to look . I'm hoping this year to pull out . I Will call it a call to action , but it's more to see how many well I can get to sign a petition asking that people who live with cancer Should be allowed to access their pension .

Speaker 2 47:33

If they're not going to ever work . Why am I ? I paid into a pension system over 2000 pounds a month and now I can't access it and I may not live 67 . But I was diagnosed and I was 49 and that unfortunately cannot be , because the statistics shows that I'm not going to give that length of time or I may not , and a lot of us that have it end up dying , and we die in poverty . Why ? Because you've taken our homes , you've taken everything , and yet we're now allowed to live long . It's wrong . At least if we had those , we don't lose our homes because at least we have access to money that can pay for our mortgages .

Speaker 2 48:16

And then Do you understand , and I think that's a , that's a drive . One of the key things that we drive , we have Translating . One of the biggest things is translating awareness in Different languages . Currently , I want to build the Nigerian one first and then take it out and see if we can get it in other places . But the one in the Nigerian one , if I get it right , you're right even one house .

Speaker 1 48:44

I will see if .

Speaker 2 48:45

I can , people like the , a Macmillan , to take it on because it's required in England .

Speaker 1 48:53

One question before you go on . So this translating the awareness is this for Cancer , people that are living with cancer , or is it awareness generally , for people who general ?

Speaker 2 49:08

Okay , okay it's general , because if , if I'm talking to you about cancer , yeah , when the entire my do an interview about cancer , I try to bring somebody who has the disease and who is the medic . So when the medic is saying this , I am , as a cancer patient , the cancer patient can help to explain it to Somebody who might have the disease . This is it , or who is supporting somebody who has family that has the disease . Because one of the saddest things is I , a lot of us don't realize Queen Elizabeth , who just died , our Queen that just died . History has it Excuse me , let's see , has it , that her father died of cancer . So if we want to deny , that's a shame , but history has it that the King , prince Elizabeth's , queen Elizabeth's father . So why is it that They've known about cancer how many centuries and we are still trying to address it ? It just shows that there hasn't , there was not a determination to address it and now One in two people will get cancer . Yeah , and so the highest death rates of cancer will occur in no middle-income countries because they can't afford it and In I'm in in high-income countries they have already got healthcare systems that give access . Hence the World Health Organization's drive for access , for access to medicine for all , but there's , there's . So those are the things that I am .

Speaker 2 50:57

I am , I am very into Now you guys , my home base , I will always prioritize . Yeah , we think my father still lives in Nigeria . My father still alive , and that means a lot to me . Yes , my mother died of cancer , like I said , so it is important that we don't throw away what our own values in this space of running after things . I Always say to people if I don't make it , I want to make sure I've left a legacy for other people to continue . I mentor quite a lot of advocates and make them learn where come , let's go .

Speaker 2 51:32

I'm going on a conference now . I want you to come with me . Why it's not ? A lot of people say you don't take . No , I take people because when I'm not here , I want to believe they will continue the fight until a voice . We've struggled over the years . We're talking about cancer and it's very sad to say that the cancer patients voice is now just been addressed . So how are you been addressing the medicines if you're not asking the patient ? How do you know the exact needs or the impact of your drugs if you are all you're doing is giving us question years ?

Speaker 1 52:11

You know , I'm here , I'm just great because there's a lot of things you said that I didn't even realize . You know , even the aspect of pension , it makes sense , but something that you just , you know , just don't think about . But you know , I'm just so grateful to you for coming on this podcast because there's a lot you've talked about that Kind of go . Yeah , that makes sense , that's so true and these are things that Should just be , but then you know they're not being thought about or not being dealt with . So , and Denise , in terms of the people that you know that you focus on a lot , because I know you've talked about the cancer . You know cancer patients themselves , those living with cancer , and what about the awareness in terms of people being diagnosed . Do you work ? Do you do anything in that area as well ? Just kind of .

Speaker 2 53:12

Okay . So we support the the process of diagnosis . So if , for instance , we have a patient that has been told they've got cancer and they need somebody to be with them , we'll find somebody . Anywhere in Nigeria , we'll find you somebody to go with you . If there's funding , we start to tell you there's funding here , access this , try this , call this person . Call

Support and Resources for Cancer Patients

Speaker 2 53:39

that because our community is still quite small , even though it's large . It's a very large group of people , but it's a very small community , so you can always call around to find who can help where they can help .

Speaker 2 53:55

A few people have turned to getting funding globally from places like Goof on Me , like I said , which is why I used when I said cancer patients are the most expensive beggars . People think I said with a careless song but you can't afford the payment . Okay , my treatment cost , I cannot . I'm sure it cannot be less than 10,500 , 10,200 , every three weeks . Who can afford that ? Yeah , let's not lie about the challenges that people face . And then we also help you with things like people just call and say I just want someone to talk to , and most of the time my team will say what's the issue ? It's not me , I don't have cancer , I just want to talk to someone and I immediately know it's a family member who has broken down and they don't know what to do and then I have to walk them through . Okay , come on , now let's go , let's believe , let's trust . Okay , let's keep going . What are the plans where we who is the person helping you ? And you know , we start to work on that . We have people that need funding . Wherever we can , I will find somebody who can help raise . Okay , like , for instance , at some point at the end of last year , people were looking for mass cotomy bras . I hope I said it right , but it's the bras for those who have had breast cancer . Okay , mass cotomy bras , yeah , and I knew people that had it , so I just refer them to people that have it . That's what I mean about the community . I knew people who had it , so we can find .

Speaker 2 55:37

I always try to say to people and this is where I hope cancer organizations are not just cancer , but global always remember you cannot do it all , so partnerships with other people that can do it helps us to help more people . I am good at their awareness . I have television access , so I have an awareness television program almost every week which allows me to bring in different people in the spectrum , from survivors to doctors , to organizations , to the government , or to talk about it , talk about cancer and let the people of Nigeria , where I come from , know what's going on . In the same way , those same videos are all on YouTube so that anybody can go there . But it's just important that a lot of people go on it , watch it or don't say anything . And the more you talk , the more you either like and share , the more chances are more people know . Oh , this resource is available because the resources are there and they're consistent . But if you don't , if you don't access it and sharing people , then you're not helping us to change the narrative . And the best way to reduce the cancer deaths in the world is through their awareness program . It's through their advocacy , it's through these videos , these conversations , because by doing that , you are helping people to say , oh , I've got a consistent headache .

Speaker 2 57:08

Oh , I've got a consistent stomach ache . Yeah , what's the reason I have diarrhea ? Oh , my goodness , you go to the doctor , you give you medicine , you come back , you go back , you go back , you go back , you go . Once you've gone back a few times , you need to start asking the doctor , excuse me , doc , it's not like that now , stop , stop , stop . I want you now to check and make sure you rule out that I don't have cancer , because cancer is an everyday illness . People don't know . It's not a sickness that comes from the . No , if you have a headache , it can be cancer . If you have diarrhea it can be cancer . If you have constipation it can be cancer . So if everyday illnesses are cancer , then the faster we understand that we can solve it .

Speaker 2 57:52

Another thing that a lot of people are not aware of is that cancer is in . We are all born with cancer cells in our body , all human beings . The question is does it ? Does it activate ? So if it activates and it activates in stage one , then it's under control . Whatever it is , if it's a tumor , a small tumor in your breast , they just remove it , they burn that part off , kill that cell , that's it .

Speaker 2 58:22

Your life is back to normal . No change , no nothing . But you see a lump . That's very small . It's there to address that small . You wait , it gets very big . Any good , you're still running around . You've already let it get worse . And that is what cancer cells are . They are actually in your body . You're born with cancer cells , some activate , some don't , and in two people who will get cancer from 2023 . So what does that tell you ? If you have four people in your house , two people may get it . So don't run and hide . Put your head in the sand and say it's not mine , I've got constipation . Or you say I've got diarrhea , what's that ? And they say no , it's one of Nigerian sicknesses they call jajijajai , I think . Meanwhile you just sniff at that and then stop yourself from getting colorectal . Do you understand what I mean ? And it's just so sad because they are easy to treat if they are at the beginning .

Speaker 1 59:20

Yeah , yeah , yeah , no . Thank you so much . I think you know that the point you've raised are really important . I'll go back to that issue of if you have something that you keep going to the doctor and they're not finding a solution , don't stop . Just make sure that you get to the root of it . I think that's so important and we could see that from your own story . It's a case of don't just give up and say , okay , yeah , the doctor said I'm fine , so I'm fine . If you don't feel fine , you know yourself , you know your body , keep going and the whole aspect of being you know , just when you notice something is not right , go for help and check us . You know we just need to keep checking ourselves , we need to check our bodies and once you notice something , go and see a doctor . Don't stay in denial . I think that's so important and you've made the point , so you know so truly that if it's picked up quickly , then there's a solution . Most times there is a solution , it can be helped and you know , but it's when you leave it for so long , then that's when there's a product that can be a potential problem . So thank you so much . I just because I know we're almost getting to the end .

Speaker 1 1:00:38

Now , one of the things that I want to come back to is how you started working with the counselor . You started working with the counselor fight about five years into living with cancer . That's correct , isn't it ? So what advice would you give people now so somebody that has just been diagnosed , or somebody you know , whether you've just been diagnosed , whether you've been living with it , you know ? Would you say , start immediately to work with a counselor or start , you know ? What advice would you give ?

Speaker 2 1:01:12

A lot of people stick . You know , in the cancer world there's something called stigmatization . People say , no , you shouldn't say that , but

Handling Stigma in Cancer With Support

Speaker 2 1:01:20

it's true . What is cancer is not my portion , it's not this . There's a reason why people don't want to be identified cancer because a lot of cultures have a lot of issues around cancer and you can't marry this person because they have cancer in their family . You can't do this . It's a standard thing and that , I think , is the fundamental reason why we get to the point of stigmatization . If you have cancer , I wouldn't use myself as a starting point , because I went into it telling God you know what . Whichever way you're going , let's go it together . But that is because I always say , all of us have some form of faith in our subconscious .

Speaker 1 1:02:01

That's true .

Speaker 2 1:02:02

And we believe in some God in our subconscious and we revert back at the point of cancer . So you've got to first find that , yeah . Second thing then , when it comes , once you see you cry a lot because when blam , blam , let's use the UK if you have cancer in the UK , you start to cry a lot . You start to go into depression . Yes , yeah , don't deny you're not going to depression , don't bother , it's not worth it , because it is the skill sets to navigate through that you require and the , the counselors , are the only people that can help you . I am not being funny . When I was at that point , I didn't know how to do it . I just sat down there and I was like you know what she said to me how are you today ? I said I'm fine , thank you , with my always , I'm always smiling . I refuse to be sad . And she just asked a question . I just like right , they said crying .

Speaker 1 1:03:07

Yeah .

Speaker 2 1:03:08

And I was like , yeah , it was already inside . Yeah , and it took me four sessions of saying hello to her to stop crying when he talks to me . When I went back , I had a break from half , because I come off for one year and then , if I'm not well good again , I go back in . First thing I did was I started crying again . This was two years ago . This was last year . Why ?

Speaker 2 1:03:33

Because I found myself , as a result of the drug , in excruciating pain and I could no longer walk , and I can't recall I had to call my children and say to them you know what ? I'm not sure I'm ready to fight anymore . If this is what it is , I don't want it . But as soon as I saw my consultant , she got me straight back into my counselor . Between the two of them , the one I was dealing with is the pain . It's the pain . It's the legs , okay , fine , but the cancer we've got under control , okay . So what are we going to do to get your brain back ? See , it had to help me to walk my brain back .

Speaker 2 1:04:09

That is through my counselor , that is through the way they talk to me . When I'm in , down and out and I have to see a consultant that is not my consultant , I now say can I have their comment when my consultant is in ? Because you have to also have a relationship with the person you are talking to . Yes , yes , that makes the significant difference in how you are now , because you are vulnerable , at your highest level of vulnerability . Just let it go . Don't try and make out I'm very strong , me I'm not strong . People say you are strong . That is your opinion of me . I'm not given what is God's opinion of me and what is my opinion of me .

Speaker 2 1:04:55

Very important and when I can't do it . I know I can't do it and I say I can't do it . There is no cycle . I do Every cycle . I do within a cycle of three weeks , one or two days . Within those two to that period I will cry Because the pain is much . And now because my daughters , my daughters help me and look after me . They will soon stop looking after me , but for now they are . I find that they help me to take my granddaughter straight away from me so she doesn't see me crying because I'm very close to her , and take her away and then just sit with me and just let me cry . Yeah , you can't do anything for me .

Speaker 2 1:05:44

The best thing is to drink water and sit there quietly and let me cry because you can't help me . So when it comes up , I'm begging all the cancer patients across the world . If you hear this , a cancer patient cry , don't be super human . It doesn't . It's not going to get you anything , if anything . When you let it out , you accept where you're going . You can fight . You will then know how to get the support you require as and when . Those are the only times you will get it . Any other time you will get it .

Speaker 1 1:06:21

Wow , you know , and I'll even add to that that when you know if you're supporting a cancer patient , let them cry when they when they need to cry as well , because that's important , because I think it's almost sometimes you find that guilt is put on . Don't cry . It's almost like a sign of weakness . It's not . It's actually strength , acknowledging your emotions . It is a huge strength , and I love the way you've brought out this emotional aspect of it , because there's a stigma attached to emotion . It's almost like you're weak if you cry , but you're not .

Speaker 1 1:06:58

And there's something you said , denise , that I love so much , and it's the fact that , yes , I see you and say , gosh , you need to be a strong woman , but the important thing is forget about what people see . You know yourself , and I think that's so important . So you identify yes , at this point I'm strong , but today I'm not , and it's acknowledging that and doing something about it . So you know , honestly , denise , I'm so , so grateful for you to come to really open up and open yourself up to us . And you know , I've learned so much , and I'm sure people listening have learned so much , even how to support people , how to support friends , what to say , being careful of you know a narrative and it's you know I talk about this a lot , surely , when I'm working with leaders in organizations but really bringing it to you know somebody that is a friend or someone you're supporting , it makes such a difference , and also for people living with cancer .

Speaker 1 1:08:02

You can see how the importance of actually guarding your own mental state what are you thinking , identifying what your thoughts are and because our brain is just such an interesting organ , there are times that you can't take control of it yourself and that's when you need the right support . And it's identifying what that right support is . It might not be your friend , it might not be your relation , it might not be your child , it might be somebody external , like Denise has explained . It could be a counselor Sometimes it's not or your neighbor exactly , but it's really identifying the right person and making sure that it's not the wrong one when the wrong ones are coming with their advice . No , protect yourself from that . That's so important .

Speaker 2 1:08:51

One thing you say is that you should always get the correct circle of your support network and all your support networks serve different purposes so that wherever you need them , you are accessing the right person . It's very key . A lot of people don't . I don't know if that explains . I hope I've explained it well .

Speaker 1 1:09:14

Yeah , no , it makes sense . Some people know you . Yeah , no , it makes absolute sense . And I think even even you know with cancer patients , yes , but even outside you know the cancer patients life , because it could be even be you as a person . You need to know what your different associations or relationships serve and really you know making the most of it . And also for you as a person where do you give ? What are you giving ? And just paying attention to what you're doing . You know how you're supporting somebody , or actually not , in terms of what you say and what you do . So I think we've all got that responsibility . You know for ourselves , but also you know in terms of what we give and what we take as well . So , no , thank you so much for that . So I'm going to put a link in the description to the charity . And then , denise , what else is there any other ? Is anything else that you want to say in terms of what we should be doing or not doing or paying attention to to as we round up this podcast today ?

Speaker 2 1:10:28

And one thing I would like to say and thank you very much for this , quite a nice chat . I can't believe time has gone this far . One of the things I want everybody to know is your body speaks to you , your brain speaks to you , your emotions speak to you , and one day you will come across cancer , so don't let cancer be the boss .

Speaker 1 1:10:55

Take control .

Speaker 2 1:10:57

You will win if you are actually aware , and that's why it's you have to be aware of you for you to be able to be aware of what's going on around you . Cancer is real . We don't have to die if we are aware . Share another thing I want to ask the world Always help , every little helps . It's the thinker test scores advert . For me , it's together we fight , together we win , and if we win , it's another life saved . And if we don't , we did . I say to everybody we had a good fight . So all kinds of patients , we're still survivors . Thank you , we're getting there . That's my sticker for you . Thank you . Thank you , lauren , thank you , thank you , oh , dennis .

Speaker 1 1:11:58

Yeah , no , thank you . So , so , so , so , so much . Your body speaks , your brain speaks , your emotions speaks , listen , listen and act on them . That is just so wonderful , dennis , thank you so very much for really coming and educating us and really opening yourself up for us . I am so , so grateful to you and I really wish you all the best , and I know that God is with you .

Speaker 1 1:12:24

And one of the last things I will say is I think just speaking to you just shows the importance of paying attention to your brain and being able to manage your emotions , understand your brain and being . You know , I will say , rewire your brain . And you've just given us a good example of the importance of paying attention , being in control of that brain . When I say being in control , sometimes it's actually going for the right help , because it's that right help , like you described , that then helps you with your own thought process . It's just paying attention to them and taking the right action and the keys we can . And from what you've described , you're told three months in Nigeria , here you are today and you know what you did is take that control from cancer and say you know what ? This is my life and I'm going to leave . I'm going to be in control and I truly admire you and thank God for your life and looking forward to more conversations and seeing you , you know , push through through this . Thank you , denise , thank you .

Speaker 2 1:13:30

Thank you . Thank you very much , Maureen . Don't worry , we're holidaying together soon .

Speaker 1 1:13:35

Yes , we are , we are . We will have so much fun . Awesome . We've gotten to the end of another enlightening episode of Lead to Excel podcast . Thank you for spending your valuable time with us today diving deep into the intriguing world of neuroscience and leadership . If you found value in our conversation today and its packed insights or even questions , I invite you to share your thoughts with us . Join our community on the Mindsight Academy it's called Limitless Leaders Community where we continue the conversation and share valuable resources to help you lead an Excel . Please also consider leaving us a review on Apple Podcasts , spotify or wherever you listen to your podcast . Your feedback not only helps us improve , but it also helps others find our show . Lastly , don't forget to hit that subscribe button so you never miss an episode . We have a treasure trove of insights , inspiration and expert advice coming your way in every episode and , trust me , you won't want to miss a single one . Thank you once again for tuning in . Until next time . This is Morinciana reminding you you are limitless .