 I want to welcome you all to this maiden edition of the programme and we hope that you will enjoy and start to pick up tips and understand the journey of cancer survivors across the room irrespective of the type of disease. So today in the house I have three of us cancer survivors. We'll be talking about it and we're using this opportunity to make people understand that people still live with cancer and still have some sort of good quality of life irrespective of the disease. So I'd like to welcome on firstly anaesthesia. Let me introduce you properly. Anaesthesia is a stage 2 breast cancer triple that's what it's called. It's a stage 2 triple negative breast cancer survivor and a widow with three children. She enjoys singing and reading and coli soon colia obi is a stage 3 breast cancer survivor. She's a woman with a dynamic vision of reducing cancer and mortality rates and creating awareness. My name is Denise Edgel. So within the four of three of us here today I am what you call a stage 4 breast cancer survivor methodizing in the brain with this disease methodizing in the brain. I'll explain to you what methods mean as we go along. Welcome. So ladies, how are you today? Fantastic. Well, let's sit down and let's have a chat and make sure that we get the message out and help save lives because that's the essence of all of this. So very briefly I'm going to ask you both to share your story and let us understand so that we can pick up the differences and I'll share mine as well. So my journey started in 2018 when I was to the precise March 2018 when I found a lump on my left breast. I was very enthusiastic in going for my holiday and didn't think about the the lump. So what I did was I thought okay I would if we possibly would not be anything and by then my mind was never on anything cancer at all. I've never thought about oh it could be cancer it could not be. I've never even heard cancer wasn't something that I was too familiar with even though I've heard the word cancer. So I went on my holiday got back and I got a letter to speak to my GP to do what is called a smertest which is for to detect if there's any kind of cervical cancer. So I did say to them oh I found a lump on my left breast and it's quite big and it's solid so they asked me can you come in immediately which I did and to cut the long story short I went to the doctor he looked at it referred me and I did I went to the hospital I did what is called a mammogram which was it's a machine x-ray to check the size of the lump if there's any lump at all and they dictated a lump and afterwards I was asked to do what is called a biopsy so they took out the tissue sample of the tissue to do to take to the lab went back and I was told it was um stage three breast cancer and lo and behold what did I do I told the doctor to cut the breast off immediately. Thank you I'm going to stop you here so I'm going to give you a briefing of my journey and my journey was very easy I was also not I was actually to be honest with you all I had was a headache so I'm not going to say it as if it was a big deal I had a headache a headache that just wouldn't go I did all the tests and went through I mean hospitals all over Nigeria from Abuja to Mina where I was living to Lagos to about four hospitals in Lagos and no one could tell me what was the cause of the headache and eventually I had a doctor say you know what everything looks very okay with you Denise we can't find anything but so we are sure that we have addressed it we are going to do an MRI scan and lo and behold we had cancer that had spread no so how did they put it you had they say you have lesions that's it that's on Nigeria I call it because you have lesions so I said what does that mean they say well it's more than one I didn't understand all that and I just thought you know what I'm out of here and I left and came out to the UK and found out that I had to have brain surgery within seven days having brain surgery was where they picked up that it was they didn't know it was cancer because once you see more than one apparently I'm not a medical doctor I'm a patient of cancer who has become very very knowledgeable I'm a teacher let me put it nicely I'm a teacher because I like being a teacher and then I found out that I had breast I had breast cancer methasizing in the brain Collie what's the role of family in supporting this journey family actually should play a vital role in any cancer journey but sometimes that's not the case so you find out that sometimes some people shot shot shot out family members from when they're going through this when they're going through this journey so when I mean shutting them out it doesn't mean you know not whatever but at the end of the day they tend not to tell them especially if you're going to be getting kind of a negative vibes from them would decide okay these are the family members I know that when I say XYZ or I've got cancer they would not judge me and they will hold my hands to go through the journey but they are family members when you tell them in my case I have somebody who is supposedly to be a close family member when I told the person the person asked me where did you get the cancer from so you see when it comes to family you have to be careful me personally I have to be careful who I disseminate the information to so when I was going through my journey I know how my family dynamic works so the only people that knew I was going through cancer treatment were just my sister and my mom's younger brother it's very interesting because family friends I think there's going to be one common thread amongst all of us and I think it's amongst all cancer patients is things that are said at the time of diagnosis and a lot of people not realizing the impact of what they see at that time I remember somebody saying who sinned and I thought really that's a Christian he was even a pastor so I can imagine and that's why I asked you because I'm coming back to another question and I'm waiting for her to come on would you say um cancer is stigmatized would you say what? cancer is stigmatized yes I would why why I would say cancer is stigmatized is when they see somebody who's gone through cancer the way they treat that person is totally different from the way they treat maybe somebody who's gone through malaria and again that most people are very myopic in their thinking so sometimes they think cancer is um what do you call it's uh contagious contagious yes so they tend to stay away from you and try to you know avoid you and when you come out and say oh um I've been through cancer they'll be looking at you okay maybe it's the sins you committed that God struck you with cancer or maybe is your past life or whatever so by the time they start unless you allow them to label you and that's why you find out that most people don't come out to say anything they live within their within the shelves of themselves so uh yes cancer is very stigmatizing thank you interesting because I don't think that a lot of people realize that and a lot of good intentions come out of trying to care for people with cancer thinking if they are good intentions but we we have to accept a lot of people walk away from you um a lot of things are said that are very hurtful a lot of people don't navigate the journey properly because of lack of knowledge I always stand there and that's why awareness is very key so I'm going to talk about the cancer disease itself now um uh talk me through your treatment the first uh thing I had was uh the removal of sample of the lymph nodes so it was I did a surgery on the local anesthetics and it was a day surgery and where they took out samples of the lymph nodes to test afterwards I had the big one which is the mastectomy and which is the removal of the breast where I had my old breast chopped up then uh on the same day I had what is called a reconstruction so they took tissues from uh from my body and reconstructed it is I have a designer breast so super proud of it what the devil thought you know uh that the devil thought we used to so in the process of it I had to get the book lift to make sure that the reconstructed one which obviously will be firmer than the other one synchronizes with the new one afterwards I had chemotherapy I had eight cycles of chemotherapy which was the most dreadful one because I lost I wasn't afraid to lose my hair because I thought okay I've heard I was warned you could lose your hair that X um your your nails could turn black you will lose your taste and everything and all of it I experienced but to be honest when I was going for my chemotherapy my eyelash was on flick even when I had my dreads as soon as I finished the first cycle of the chemo by the second one I saw one dread that already fallen off and I went to my brother and I said can you shave the hair and I shaved the hair properly and I wore my wig so anytime when they see me coming for my chemotherapy every three weeks I ask him are you going for a party are you going somewhere after this I said of course I'm going somewhere after this I've come for a cocktail so what do you expect you have to look pretty to come down there and not look gloomy so you know I I was more like putting Bob smiles on the faces of the women there and it took a ton because there were some other younger girls when they are coming they are just coming on you know just like that let me just come and get this now but I noticed some of them one girl went to do her nails and when I saw I was like what's going on she said you taught me how to come to come to take chemotherapy and I've taken the steps so and I had a radio I had a one month one full month of radiotherapy and after that I'm now currently on what is called a hormonal medication tamoxifen okay well thank you and I say very briefly can you summarize what stage two breast cancer is all about thank you yes um stage two triple negative breast cancer doesn't have a receptor like the doctors told me I'm not a doctor I started off with a lump I had a mammogram biopsy and that was all brought out um the stage and told the doctors what way to go I was told I'll have four cycles of chemotherapy and then it accept on me that is the complete removal of the breast I did that at the second stage of my chemotherapy my hair style falling off and so I had a complete shave and after the fourth cycle I went for the max tectomy I don't have a reconstruction or when I dress up to go out you don't know I have only one breast and so I have decided to tell people that cancer doesn't kill if it detects Ellie and if you receive the treatment Ellie thank you um and to those of you watching us and listening to this we're trying to make this discussion quite light because a lot of people are afraid of the word called cancer cancer yes can be a killer disease but doesn't have to be and we want you to know that you don't have to fight on your own so long as you know what you need to do to get through this journey I'm going to talk about mental health because one of the things that we've had is the challenges to do with mental health and um there's a because of the denial let me put it this way because of denial I think we lose more people and statistically globally one in two people will get cancer all over the world um when I was at the world cancer congress it was also identified that 2 percent 2.4 percent of Africans um are the ones that live they remain so in currently we've got 80 percent 70 to 80 percent of um cancer cancer patients do not survive in Africa so I'm going to ask you a question now looking at your journey and both of you will have a shot at this looking at your journey give me one or two things that you would give to you would give as a tip very quickly to anybody that is going through cancer two tips I'm going to give uh in respect of um to people going through cancer it's number one when you're going for your cancer treatment have a positive mindset that's number one you must have a positive mindset and number two do not leave in denial tell yourself the truth when the doctor says x y z take it back process it and tell yourself the honest truth fantastic okay mademoiselle anesthesia two tips I'll give yes two tips I'll give surround yourself with positive vibes people who are positive um people who will tell you they are ready to go along with you not people who will who would want you to fit it a lot of Nigerians or Africans you know they they want to fit it um it's not my portion it's not my portion if you are diagnosed with cancer face it and then surround yourself with positive vibes to eat well be happy it's not a dead sentence thank you so I'm going to add to you and might you are be honest with yourself yep and I would say why I have stage four cancer stage four cancer means it has metastasized so I said I will explain to you the differences when cancer has metastasized it means it has moved from the origin to somewhere else and what I have is breast cancer that has moved from the breast to the brain I have undergone three three cuts to the brain I have had over 10 tumors removed from the brain and I'm still here so focus is what I'm saying and listen to your body your body tells you when you are sick cancer is an everyday illness that's how I put it to the layman that means it can be a headache it's headache that got me here it's nothing there's no lump they've never found a lump it's a persistent headache people who have um had um colon cancer it's continuous diarrhea or constipation you know so I'm saying to the general public no matter anything that is persistent that is the rule anything that does not stop that you take medicine it stops and it starts again can be cancer so please if you find yourself with a persistent illness and it's everyday illnesses so not all this complicated name it is called cold that's the type headache diarrhea those are the type they do they start to build and can become cancer so before you find yourself in stage two please make sure that you know that stage one and two apparently is curable totally curable so once you are in a small pace please try and address it we agree awareness is pivotal so what do you think give me one thing that you think we need to go forward for the general public so you tell me each person anastasia you go first one thing we need to go forward for the general public um in in nigeria where i live funds are very very scarce and religion is a pain I think we should start the awareness from the pulpit let us start letting people know that everyone has cancer cells in them everybody carries cancer cells in them it is only the ones that now become malignant than that need to be to to be addressed and so we should have that that's a consciousness you know of always wanting to I think go for checkups basically we we don't we don't do that so my belief is that we start from the grass root and the grass root for me is the rural areas talk to the women who don't understand English speak to women who are selling pepper these are the people that when it heats it heats hard and by the time they present to the hospital is too late so awareness from the grass root okay and where would I come from on this one I will come from it from a totally different thing I would say that um all stakeholders make sure when decision is being made cancer survivors are in it it was shared even at the world cancer congress in 2022 this year that there was a drive or there is now a drive that in the entire running of cancer issues around the globe cancer survivors should be part of it and so committees that are being formed are now taking on people who live with the disease to be voices because unless we talk a medical doctor does not know what we are feeling I am taking Kimo as I'm talking to you today and somebody else will look at me and think oh my god she's taking Kimo so yeah so what's the big deal it is not it is a big deal because we do have a lot of challenges that go with us so how do you think we should do something differently one thing we can do differently I think that there should be a way in which it is a register of all those who provide support and to be checked so check dates that we only we have less than 100 oncologists qualified oncologists in Nigeria if you calculate 100 and then the population you know that we are very understaffed which immediately raises the alarm that that means a lot of people will be taking cancer treatment from non specialists yes okay so we need to think about how to work this differently and to do that I think we need to recognize the power drain that is going on in our country and how that is going to be resolved by the government by all stakeholders in making a difference for the lives of cancer patients okay and I say yeah you go for no call you go for this one please what we what I think we can do differently is to for when patients go to the hospital for them to be more involved in their treatments and to be able to ask questions what I found out is that most Nigerians I'm going to use Nigerians because they're the most widely people I've dealt with most patient cancer patients in Nigeria do not ask questions most of them when you ask them the my usually my first question when I meet somebody is what stage and what grade most of them don't know what stage most of them know don't know what's great so when you don't know the stage and the grade how do you navigate your treatment and when you go to a doctor and you're able to pose questions that they are unable to deal with that will automatically tell you that you're not dealing with an oncologist if you're very clever most cancer patients whether newly diagnosed or or in active treatment or in remission in quotes should be involved in their treatments fully involved thank you anesthesia can you give me your own view yes I will say we'll separate facts from fiction people are sick they go to church believing the pastor can do perform a miracle and like colia said we as um uh as people in remission who have once gone through the treatment should be a part of the treatment we we have stakeholders so we should be a part of the cancer patients journey the cancer patients story but a separating part from fiction is actually very very key and I've come to realize that it is a point where we don't always get it right so now as we draw to the end of this I'm going to give you one or everybody an opportunity to give give advice either advice to a cancer patient or speak to the government or speak to the population as to what you think what strategy or improvement whatever that will make a difference for a breast cancer survivor in Nigeria and across the world cancer doesn't have to be a death sentence if you notice any change in your body please go to the hospital and listen to what the doctor says when I was diagnosed a lot of people became doctors they told me not to take chemotherapy they had one negative thing to say about chemotherapy we should start you know the government should start getting hold of these people they are killing people whoa okay call you go on so um my advice would be to the government don't wait until people start dying before you take a decision you see somebody who's come to uh to you and you've told you would categorically tell the person you have to drop 25 million naira for a start and when you're looking at the person the person is not even what up to five thousand naira where are you expecting the person to get them funding from and this is why people resent back to churches to taking heads to taking different kinds of all sorts of nonsense just to say they are curing cancer and the government need to step up to do something uh either they reduce the cost of treatment for people who go to the government hospital reduce the cost of treatment for them or subsidize it listening to your views both of you I really appreciate it because one of the things I think people don't realize is that a lot of people will look at me now sitting on this screen and they wonder this much is just enjoying herself but if they had the opportunity to see what I have looked like over the years with my bald head and very big my head was very very big only because I had to take steroids and to have to go through that every time every two years and they have the cuts and then take the steroids and the head now becomes two times the size and it's very heavy it's a very interesting experience that a lot of people do not even know cancer patients go through the illnesses that come with it and everything it's left for us all as as survivors as patients to just keep a positive please a positive mindset you learn to laugh through your pain learn to praise through your pain learn to thank god through your challenges and trust me um it only gets better no matter what it says no matter what the decisions are finally you've got to find space in yourself as a survivor or as a patient because all patients are survivors until the day you go home I want to say thank you very much for joining me on this today as we get to the end of the year it is the aim that we make people know what to do how to do it and get through because together we fight together we win join us on comal cancer foundation on this program and watch the videos they will be shared online for you all and you can share it because awareness is key the more people know what to do and know where to find information the better it is for us to reduce the challenges and reduce the mortality rates across the globe I want to say thank you all for joining us on this medium edition and look forward to seeing you again soon