 Welcome everyone to another edition of cancer with Denise Edger. Good afternoon and thank you for joining us again today We have been looking forward to having a new chat and today in the house. I've got a advocate Survivor who's gonna be talking to us today. We're looking at methods metastatic breast cancer The highs and lows of a cancer survivor Let's look at what we're gonna be talking about Gloria Welcome this afternoon. Thank you for joining me on this Nice afternoon for me in England to be honest with you Thank you so much. Dr. Denise. How are you doing? I'm good. Good. Good. Are you? Yeah, I'm fine. I'm glad to be here. Thank you for having me You look very nice. Oh, wow Let me come to you All righty Gloria is going to be discussing today her own experiences So let me introduce her. Gloria is a career program manager a trained linguist writer and breast cancer survivor She is the program director for project being blue and a noteworthy patient advocate in Nigeria Who is who has inspired hope in other patients by publicly sharing her story And fabulously advancing the case for effective cancer care across the country Gloria, I'd like to thank you for going to join us and willing to tell you story I hope that this conversation will be Helpful to anybody going through cancer at this minute family friends relatives who need Guidance who need help who need just to hear from other people who are going through it I want to thank you for agreeing to tell your story. So let's start this conversation Are you seated? Are you ready for me? my first question Please share your story briefly for all of us to know um I was diagnosed in march 2017 Although I'm not seeing the first thing turned in august 2016 So I before the diagnosis. I'm not somebody that checks my breast. We have all the results exam I didn't learn anything about that. I wasn't doing it But that evening I just touched my breast and something was hard by the side. We left breast and Took me about seven months to do Different tests with cancer mammograms and by march 2017 It was confirmed to be a mammogram two more And that was how my journey with cancer started and in the same month I Be a mastectomy that's a social of the breast. I have to move the breast to me and um after that I didn't continue with my treatment and I was referred to chemotherapy as a therapy because of all the Surrounding to know and of course the high cost of chemotherapy at the time. I wasn't working Out of code at the time and so I I couldn't afford it. I couldn't afford The fear I couldn't afford to go go home with the fear and so I felt or things are taking out the breast at times and um About about 16 months later. I said I'm having Two more the game go on the chest for where the breast has been removed And the cost of concern and so it has to go back to the hospital Reported and I thought I'm going to be because they asked me to chemotherapy and I didn't do And they insisted go to my treatment And at the same time my mom since it's our having We had also had breast cancer and house was bad already and We're here to be family place in jail I'm doing surgery and You know community that has a better idea or the way I was going to send for chemotherapy inside the breast from all and I followed to the police And now that I had my second surgery And four months I'll move from my chest again And I was giving her to manage myself You know, well after losing my mom's chest is about four months in her treatment I began to retain that um that position So I I realized we just were giving what I'm giving everything was the same the treatment a lot of force and So I listen to that time and the cancer was not the same. So everybody's are not the same So And I have to go back to the hospital So Three years after my mastectomy I made up my mind. I was going to do chemo. I didn't care anymore about the side effects. One of my men I was going to raise the money I was going to talk to people. I was going to bring people to raise the money and just fight for my life And um, whatever comes out of it. I was interested. All that was money my aunt and I had a lot of fear because she even did chemo So I I had enough women to see the effect of them because they work for her But I made up my mind. I was going to work for to go And what can I do with yours to talk to people about it? I've always been very vocal about my challenges and I'm Talking to people about My friends I spoke to my friends. I spoke to my friends. I spoke to my friends. I spoke to everybody And I requested from people what I think and support me with And the whole law to prepare raising money for me is by this and I was able to start my chemotherapy and did my chemotherapy And that was in 2019 three years after my mastectomy And um, after that I had the little red size and in 2022 um The cancer cells means great to the hip bone And at the same time I still had another cancer on the same chest too. So, um I was able to take part in the lungs of my chest and um Start to see the therapy on my legs to ease the symptoms and managing right now I'm back on active treatment for the next three years. I'm going to go on some medication and um Yes Wow Whenever I hear the stories of cancer patient and patient survivors And I think about mine. I always say well At least we're still fighting that makes a big difference And I think there are quite a lot of people out there That do not realize that fighting is still a good way to to keep going. So thank you for sharing that story um Basically one of the biggest things that you've just talked about is your challenges, right? and Bear in mind all the conversations we've had around all this. Let's now look at what your key challenges Are with metastatic risk cancer that does not that excludes funding So we know funding is the beginning to come back to funding Okay, okay So I think I will start from lack of information So a lot of patients still don't have all the information The need they don't have enough information. I might not have all but it should have enough understand um, what to expect from their condition And even what they should do because in my case if if if I know what I What I know today, maybe I will wait two years to start chemotherapy You know and because there's so many needs flying around And uh, this needs come from friends and family people who are very close to users and Convincing to do things that can be harmful to you in the long run And then the other challenge we have is the health system as is the home Um, the health system as the world is to became Like I like I once said in the facebook post. I said, I mean I'm in a duty relationship with the mendrian health system And and I cannot leave this relationship So, um, a lot is happening in the health system. We have very few oncologies So I tend to so many patients. We have over 120, 000 cancer patients every year And we have less than 80 oncologies to attend to them and these doctors keep living every day Not just doctors the whole health worker to keep living every day So who are going to treat this patient? And then we have the issue of access to drugs So sometimes some people actually have this money. They have a lot of money to buy all the drugs you need The problem become getting these drugs How you know getting new drugs Sometimes you have some of all these drugs that are not to be registered. So that is the only one that we can afford Or that is the only one that is available and because you are free for yourself To use whatever you see just to make sure because sometimes you don't even know when When the branded one is going to come And then sometimes there are no reagents To do some tests do some screaming for you and you have to wait so there's an agent Have to wait on the long queue to do the therapy And some people have to wait for very long queue to do a mastectomy So there's a lot going wrong with the health system that is going to affect that affect patient's Final outcome and then there's no mdc I think um the cancer patient should be treated You know with a whole team of health professionals the clinical oncologist in nurse and oncology pharmacist the pathologist you know Psycho oncology Everybody should be involved so that they can be able to support that patient in different ways because apart from fitting the physical team term the cancer patient comes down with Barrage of mental health issues. So who takes care of this mental health issue? So that um, I think if we get this the the health sector right there For very few research going on so many questions left on answer for patients Very few clinical trials and very very few patients having access to these clinical trials So I think if the health sector itself is put together it Works well. It will not respond please So it's it's actually a very very big challenge here Thank you. Thank you gloria. Thank you. Um, you have highlighted some very concerning issues um that I think it's good because it opens knowledge in the space And then we know what we're trying to deal with so at this point viewers, we're going to have a break now and we'll be back in a few minutes sit tight and let's continue this conversation On what's going on in the cancer space and the Highs and lows of the cancer patients in active treatment. Thank you. Let's take a break here Thank you everyone for staying with us now We continue this conversation with gloria cancer survivor who has battled disease for the last since 2017 And it's still an active treatment gloria. Thank you for staying with us and thank you for sharing your story Let's continue this conversation. Let's continue to see what's going on. Let's see what the highs are Um, how have you navigated the everyday challenges to show you have a reasonable quality of life? Now, I'm going to be very careful when I say this question And the reason I'm saying that is that you and I know that with the challenges you have identified our everyday life Or at least I recognize the everyday life for me as very challenging And one of the first things I I say to people a lot of people don't know when they see me on screen Is I use a walking stick? They see this person are we smiling and happy, but they don't realize the challenge is much So now for you in the same seat How have you navigated every day? The funding with all those going on Okay Honestly, it has it's difficult So like I said, uh, when you see people smile, you don't know what is going on in their head And um, I've had to you know, I've had to manage mental health challenges a lot Um anxiety panic attack depression Yes, uh, even at some point and um, somebody once said that it's not as if you have cancer You don't have other problems. So you have something as big as cancer With other life problems Just an extra baggage that is as huge as every every other Problems of life this again for that. So it's a big deal But I try to not allow cancer to Everything about my life Yes, like I'm also once said that um Life can't keep taking from somebody but life shouldn't decide How you react to the things life has taken from you So I make up my mind to be happy I try to keep working even when the uh had uh Recall rise last year and um, my boss told me to stay off work I told him I can't stay off work and there's something to keep me engaged to keep my mind engaged And so um, I keep working I have friends and I do a lot of phone activities And um, I prioritize I think that is one thing A cancer diagnosis helps people to do Is to prioritize And begin to have more focus on the things that really matter to them and what they really want to achieve And I've been careful about that. I've been writing more and with a lot of focus now So, um, I think these are the ways I have been able to navigate and then by helping other people I find satisfaction in sharing my story Because a lot of people don't talk about experiences and because of that many people still think That want to have cancer is an automatic death sentence because people don't come out to share their stories So I find joy in sharing my story just to give the other person hope Sometimes to put that get this hope or get this information I want to want to have sufficient somebody battling mental health issues Maybe somebody, uh, badly domestic abuse and without convenience to oh I just want to beat up your courage to deal with my own specific problem So I find joy in sharing people. I find joy in sharing my story I find joy in doing the things I love to do And be more purposeful about life. They are very bad days. Very very bad days that everything makes no sense What I try to do is to quickly push myself out of that place as soon as possible and continue living. I'm here already I want to thank you for saying that because what I I I It's very interesting because when I was talking about this thing at one point. I remember somebody saying to me You are not supposed to say mental health challenges and I was like, what do you mean? Do you know what it is to wake up in the morning? and And be spent and have to cry because there's nothing else You're in pain or you're looking at the whole world or you have children You have to worry about and they are trying to sit down to work out how you're going for a chemo treatment And then you know that that's a whole day gone And if I say look at me, I thought But you're everything's fine. I don't know because I smile is because I refuse To let cancer sing a song on my forehead and I'm glad you said it So at least cancer patients who are going through it understand that although we're smiling It doesn't mean we're not going through the same challenges But we have to learn to navigate. So I hope that has spoken to someone Monkey thing that you mentioned which has really thrown me and um, I want to raise it because Of funding, you know, I came back. I said I want to talk about this funding funding of the Has been done predominantly by you. However, I do know that you have been able to access at some point the cancer health fund So I want it to be known that we're not saying the cancer health fund is not available But You've had challenges with that So can you share that because the people that are supposed to be in charge need to know that they Is there are issues going on with this? Thank you Yes, I remember to access to get The cancer health fund I I have this form That has allowed me to use the services, but at this time my Treatment, um, I'm on currently Have not been tied to the cancer health fund. So that's a piece of the pain out of focus So the drugs I'm taking now have not been tied. I know that with the therapy people can do it easily surgery Similar drugs, but the specific drugs I'm taking right now have not been tied to it. So I I don't have the form but Not benefit from it So what I've I've described it by doctor. I should have showed me that they're talking with the company to Make sure that um, we come on board the cancer health fund. Well, at this right now, it's a pain out of focus Wow, so Basically for the next two years you are going to have to be seeking assistance from Every every time they can hurry because no matter what we say The cost of cancer care is very expensive. That's what you're saying Wow Well, hopefully maybe somebody will watch and and want to reach out to you. I really do hope so Um, not for any other reason but no matter what we go through. I do appreciate this story I'm going to ask you another question. Um In your journey on this and this is I'm trying to close up now so that we tidy up Society in my view has let us down And when I use let us down, I use the word very I don't use it nicely. I use it as a global term Society has let cancer patients die globally Society has not been fair to recognize that in 2020 that we are in over 4 million people have cancer and more than 50 percent of them have already died So before we now look at Nigeria where our data is only based around those who present in the hospital Yeah, we have to be back Survivors have gone through and I keep going through this challenge name Um I will name one and you will name two And I know one of them everybody calls it our begging strategy, but I really don't care, right What do you want to do? What do you want society to do for you and all other survivors cancer survivors? When I use the word cancer survivors anybody that has got a cancer diagnosis for every day you live You are a survivor. So let's put it and let's try and be positive about our life. We have survivors and we'll smile Name one I I my own name is going to be financial support And globally it has been known that any cancer patient across the world Who is who is not funded because they have family to fund lose their homes And their income within two years and join the beggars club So that one I would like to see Nigerian government go and relook at their funding thing that they seem to say they are dashing out money And reflect on going to the cancer centers to see how they can support Cancer patients. That's my own thing. That's my own wants. Give me yours. Give me two. We've got two minutes and then we're closing up Okay, in addition to that, I I Begin to provide not emotional support psychological support to cancer patients I I noticed in a support group that you know That the world seems to be on the rise for women with cancer And I wonder why somebody will work away from their power because they have a disease they do not bring on themselves So I don't know how those men are going to survive. Some of them. I know have died And I'm not surprised because some of them have to go through the boss about being cancer So That On the other side We translate to supporting people in any way you can Immigrant money, you know, sometimes Can somebody's in the clinic is going to check on their children I feel that you need to check on the children. You can wash their clothes bring them food Take them out to do some fun activities anything that does make them forget For a while what their life has turned to Is very important. And of course cancer patients talking to cancer patients Very very necessary because it's only a cancer patient that can understand what you're going through I might be able to relate in very clear terms. So that's a support very very important I want to thank you gloria for sharing your story very honest note It's it's quite interesting and I thank you for the the solutions and The way you're looking at how we need to make an impact one of the things I really agree with you is for instance I am sorting out a cancer survivors day In England and I'm trying to just get cancer patients family and friends to to just sit down Let's just eat play games and just be happy because That's all we've got we've got to be happy and you got to learn to be happy So to all those out there, whatever is going on no matter how bad it looks between gloria and I we are saying to you Please be happy no matter how the storms rage today is a good day tomorrow It's not a good day. It doesn't mean just fight and aim to survive and to all the supporters Please hang in there. Please. We are really really appreciate you gloria. Thank you for joining us this afternoon and thank you for your time Thank you for sharing your story and I will be coming back to you as you know We have to think about where we're going next. We have to go and make noise globally Maybe some money can come to Nigeria. I don't know We just have to do the right thing You can out follow us on common cancer foundation You can find us on our youtube facebook instagram everywhere. We're all over the place Just look for either dr. Denise edge or all look for common cancer foundation You will find us and you can get information. We've got youtube channel This will be on the youtube channel once it goes on air and you Enjoy yourself. We look forward to seeing you Again very soon And thank you for Staying with us again. So bye