Mo Haque joined Yasmeen Khan during Drive on talkRADIO Friday 10th February. He shares his cancer story and the crowdfunding campaign he launched after the NHS could no longer help him. The full interview can be heard below, and the transcript is below.
Yasmeen Khan: This next half hour I know a lot of people who have their story with Cancer whether it’s them who are affected personally or they have someone in the family or friendship group that’s been affected.
Before we talk to my guest I am just going to talk about something that happened to me these last couple of weeks which was I had a problem with my voice and my throat for some month now and I am prone to laryngitis in the winter I get it every so often and when you have this job it doesn’t really help when you completely lose your voice. But I have a sort of croaky-ness going on for awhile and went to the doctor. And so she peered into my mouth and said – Okay – I would like you to – I think it’s probably fine to talk about it what it might be, what it might not be and at no point did any sort of big scary things come up and she said let’s get you checked out. It’s important anyway for your job and I am like okay fine.
And a couple of days later this is where I go wow this is when the NHS does really work for me. I get a phone call and they said Hi! We are phoning because we had a referral from your doctor and we’ve got an appointment for you and we are just wondering if you can come in on this particular date or time and they said we are phoning from the Cancer Unit at the hospital. And I nearly dropped the phone because there was no point that it really entered into my head that might be something that it would be. And I said I am sorry I thought I was going to be seen ear nose and throat? Yes you are but it would be at the Cancer unit because they are specialists. And I said OK – sort of agreed the time and just got on the bus and went to work and was sitting there and thinking it will be fine it’s just a precaution. It will be fine it’s just a precaution. The doctor has been brilliant, I can’t fault my GP. She is just trying to help me out. She knows I am concerned. It’s just probably something they are going to cross off the list.
A few days later I found myself walking into somewhere and it’s terrifying anyway but – who’s a fan of the hospitals? I definitely am not the last couple of years. It’s terrifying to walk in somewhere that has the word cancer over the doorway. Just emblazoned above it. I find myself walking and what on earth are you doing here on your own. What if it’s bad news, what are you.. Why… You know come on.. Get your logical head on. It’s just an initial test – they wouldn’t be able to tell you something today anyway unless it was truly horrendous and they looked into your throat and saw. And so horrible memories came flooding back from a friend we had from the university who one summer after we graduated developed a sore throat and it like a bit weird as it’s summer, no colds or flu really doing the rounds but he had this sore throat and it went on and went on and went all through this summer and that summer our friend one of my best friends, he was a friend of hers got married and this friend came to the wedding and he had a sore throat and I’m like amazed, it’s not getting any better. And just after the wedding after the summer he was diagnosed as the reason he was losing his voice was not because there was a problem with his vocal chords because there was a great big tumour resting on them, pushing on them. That was why he was losing his voice. And sadly he was properly diagnosed in September and he passed away on the boxing day of that same year. And as I am walking into this hospital that thought struck me, I got that. I’ve got the memory of that in my background. What on earth am I doing on my own. And suddenly I went from a grown up logical person to somebody who felt like childlike and frankly terrified and I was seen straight away. It was the first appointment in the morning and the Doctor introduced himself and said we are going to have a look at you. I am going to spray some stuff up your nose so I can have a look down on your throat. And I was like okay – I just went along with it. I hate, I am not good, I am quite queasy anyway I hate all that stuff and up comes the stuff through my nose and it was horrible it tastes disgusting and I said that’s awful. Why didn’t you not tell me and he started laughing And he said because if I told you how disgusting it tastes – you would have not done it and he was good doctor. He was kind of fairly straight down the line. I guess it was a camera thing for the nose and then it can see down through your throat. I was tensed up and I was I’ve got low pain thresholds and basically I was big baby that was what I was going to say because I was scared. And he had a look and he went all good – all fine and I said really? And he felt my throat. It’s fine. It’s probably this and this but basically it wasn’t cancer and that was my lucky day. That really was my lucky day because I sadly had been there to that same place not once but twice previously because I had breast lumps and the doctor referred me straight away and again thankfully they turned out to be nothing on both those occasions. So it was my lucky day on those occasions but here’s the thing and I’ve got to bring my guest in a moment. We are all aware of the crisis that the NHS has found itself in due to an ageing population. And we are getting older and sadly huge lack of funding. It seems though that the number of people having to pay for their own cancer treatments therefore is on the rise inevitably. My guest Mo Haque crowd funded nearly £200,000 for his treatment.
He is an ambassador for Alivia Swiss Healthcare and he joins me here in the studio.
Thank you so much for coming in Mo!
Mo: Thank you for having me.
Yasmeen: And have I told my story, I know it was my lucky day but to sort of say not my moment. I was terrified, I was a child again and I don’t know what happened to you on the day that you were diagnosed. But I am guessing you went through a similar emotion and obviously yours has a different ending.
Mo: Yes, Just hearing you share what happened just recently has taken me back two and a bit years when I went in for a colonoscopy after I experienced severe abdominal pain six weeks earlier. And at the point of the colonoscopy the Doctor said we need to put you in for an emergency scan. You’ve either got cancer or Crohn’s I then have to wait five days until I got my diagnosis so I had five days of agonising, hoping for the best which is Crohn’s disease which is still horrible or the worst being Cancer and the consultant just nodded his head and said yes it’s cancer.
Yasmeen: What went through your head?
Mo: I want to just crumble, wash away and hide but then I had my sister with me and the nurse was opposite and the consultant was on my right and immediately I needed to be strong. My eyes just welled up because you hear the word cancer its fuelled with so much emotion and fear.
Yasmeen: I know, and as I said I even dropped the phone the day when they even said it. But for you sitting there, getting that diagnosis and you know hearing you say that word needs to be strong my heart goes out to you. We put so much strength and value on that word and there are some days when I want to tear up there on the river – you don’t have to be strong do you. You don’t have to be.
Mo: See you know the language around cancer is “ You got to win this fight..” and when someone dies, sadly lost the battle but is not winning and losing and it’s impossible to be strong throughout because you know there are nights every single night I go to bed not knowing if I am going to wake up and that is the harsh reality and I think people want you to be strong and want you to fight the fight but there are days I am petrified and scared and just hearing all of that just takes me back to those days.
Yasmeen: But Mo, You’ve had an incredible journey with this because, let’s talk about the fundraising aspect. So what point did it kick in for you that what was actually available to NHS was not going to work?
Mo: So I got diagnosed December 2014, I had a year of NHS treatment which included 18 cycles of chemotherapy and had major surgery to remove my colon but I continued to progress into my lymph nodes so it was a year later December 2015 when the oncologist said the chemo is not working, the cancer is growing and there’s nothing else that NHS could do for me.
Yasmeen: And there’s the key phrase there, there was nothing the NHS could do.
Yasmeen: So the next step for you was what? Did you think for you that that’s it?
Mo: So I like to ask questions and I just said, what can we do? And I’ve got this condition called lynch syndrome, it’s a genetic mutation and people who have this are 80% at risk of developing bowel cancers and for women, gynaecological cancers. But the problem is most people who carry the genes don’t know about it, consultants; surgeons don’t know about it, GP’s don’t know about it. It’s a family history condition. Because I have that, all the research was showing immunotherapy works well with patients with lynch syndrome so my doctors were aware of that. And said we have immunotherapy but it’s not on the NHS. You need to be a millionaire to access it privately. But we are going to put in an individual treatment request to the NHS. Meanwhile that could take 3 or 4 months. We want to get you on a clinical trial. So they referred me to the Sarah Cannon Research Institute.
Yasmeen: And I am guessing at that point you can refer me to anything. I am willing to try.
Mo: Exactly. Because there was nothing else to do but the clinical trials would not accept me because the ones opening up were looking for first line patients. I have already been excluded on that because I had already two lines of chemo. And the NHS in March back and said, They are not going to look at the application because they have already refused somebody else.
Yasmeen: Another door shut in your face. So then the next option was for you to think, well I have to find a way to raise this money to do this.
Mo: So I was down and out because my tumours were growing and I was losing weight and people said it was scary to look at me. One of my friends said let’s fundraise. And it was at that point I was like no I can fundraise for a course, as charity and he said No, I don’t care about your vision, mission. I care about you. And it was because he mentioned let’s fundraise I begun processing how am I going to do that. So I had to do a lot of emotional psychosomatic mind body stuff to actually get myself into space of I’m worthy I’m deserving
Speaker1: People giving you money for this.
Mo: Yes, because you have to get out there and be vulnerable like kind of like beg and plead – help save my life. Ultimately there is a price on life because you have this drug, if you have around £ 200,00 you can access it.
Yasmeen: You can have it. Mo, we will come back to that story and find out about that fundraising journey and where you at now. Thank you so much for talking to us.
Yasmeen: Mo was, we got to the point in your story where you have been diagnosed you have had rounds of chemotherapy – you’ve got to as far as NHS, there were no more options. There are options available outside of the NHS in immunotherapy which you are going to cause a lot of money and you just thought having someone suggested it to you fundraising for this. To having to convince yourself that are worthy of other people’s money to save your life.
Mo: That’s right. It’s hard.
Yasmeen: Yes. I am always in awe of people when I look at whether it’s kick starter or gofundme or whatever they are, they raise money for their own business and people giving them money to do that and believing in them in doing it. But asking people money to save your life is a whole different thing.
Mo: Yeah, because you’ve asked for it. What happens if you don’t get it. You’ve had already so many no’s. And there is no guarantee that people will actually 1) see your plea and 2) feel connected to actually contribute.
Yasmeen: So where did you put your campaign? Your plea out?
Mo; We started on face book – we created it just for crowd funding page. And friends and family began sharing and we started getting invites to Mosques and community events and some of the Bengali TV channels.
Yasmeen: Picked up on it.
Mo: Yes and got media traction.
Yasmeen: So when the first, I don’t know I am sure your friends and family were the first people to put in money in there. But when the first stranger put some money in what went through your head?
Mo: It is surreal, because a lot of the donations were anonymous so I have no idea who they were and it was just so humbling because the messages that you get as a notification – This person paid this money – people have messages on them. I wake up reading them and I just feel overwhelmed with gratitude and felt so much love coming.
Yasmeen: And so you needed to raise £200,000.
Mo: Yes that was the target.
Yasmeen: And how much have you raised?
Mo: We raised £185,000.
Yasmeen: Wow, how long did that take?
Mo: So we started raising April of last year in a couple of months we raised £ 100,000.
Mo: And that allowed me to begin the treatment and so the fundraising drive, because I am on treatment it’s hard to simultaneously to go out fund raising, so we slowed down fund raising and focus on the treatment.
Yasmeen: You have the initial pot of money and okay I’ve got this. You’ve been up all night reading all the forums of people who suffered various things but you and I are not the experts don’t we? We don’t know who the right people are, you obviously got the NHS. But who do you go to say I know I need this. Where is that place in the world for me to get this treatment.
Mo: That’s where me, being the ambassador for Alivia Swiss health comes in. Because they specialize in giving people second opinion, the find the best doctor in the world. For people’s condition.
Yasmeen : For whatever it may be.
Mo: Because all cancers are different, the biology is different. Their research, medical research teams match people up to the best physicians in the world for them and give second opinions and best treatment plans.
Yasmeen: So that is where you went.
Mo: Yes, I mean I discovered them recently through my personal exploration on cancer and the word personalized approach keeps coming up as to where to whole cancer industry is moving towards matching the right people.
Yasmeen: And you used the word industry – It is an industry.
Mo: It is. But the NHS are behind. Because of my connections to the Sarah Cannon Research Institute they are seeing all the new data and the new patients. The findings they are telling me about my biology with the immunotherapy has 70% to 80 % response rate.
Yasmeen: And you were saying to me in the break. Immunotherapy is being described as the game changer but sadly it’s not for everyone.
Mo: Yes. That’s right. So the message is finding the best medical advice on your individual cancer.
Yasmeen: Not to base it on the forums. Not the best place because its not doctors on them
Mo: Alivia.com they can take your medical files and put it through the research team to find the best people.
Yasmeen: And Mo, where are you now on your journey? How many treatments still for the immunotherapy?
Mo: I had 13 cycles.
Yasmeen: All paid for by this funding? The fundraising that you did?
Mo: Yes, Fundraising each cycle because it costs £6750. 13 cycles of those‘ve had three scans, every four cycles. And my tumours have been reducing average by 50%.
Yasmeen: Shrunk by half. And what is your current situation, how are you feeling?
Mo: I am very grateful to be here today because the indications were the tumours were spreading into the spleen, into the liver it was getting worse. So the fact that the tumours are reversing, going away I am just filled with gratitude, the energy is there and I am feeling so much better. The side effects are nothing like the chemo side effects which are brutal.
Yasmeen: I have to say here, looking at you, you look, nobody would outwardly nobody would know, Victoria (in the studio) is nodding her head, you look like the picture of health. What is the latest that the doctors has said to you?
Mo: Because it’s a new medication all the research data is in real time and my physician sees other patients on this drug. They are finding that the trials are taking patients off the immunotherapy after a year and then monitoring them frequently. And some patients are showing continued benefit even w/o treatment. So that’s most likely going to be what is going to happen to me – take me off when I reach a year and just monitor me and learn through what is happening with the data.
Yasmeen: Mo, Thank you so much for coming to talk and sharing your journey. What is next for your personally? Aside from the treatment will keep going for awhile.
Mo: Yes, I am working on setting up a cancer charity that works in the whole personalised approach space. The other thing is psychosomatic, the mind body side of healing. Because whether it’s NHS whether it’s private. A Lot of it is just physical, looking at the body but the psychology, emotions, spiritual play a massive part in the whole person because there’s a lot to learn through that. Through those dark nights of the soul. And I experienced working with an amazing integrated physician. Dr Kim Jobst and he has helped me so much and so I want the charity to make psychosomatic health care mainstream and the third angle is prevention. I am going to do prevention work with various different partner organisations.
Speaker: Finally what do you think of those strangers that donated to you?
Mo: I just thank them from the every ounce of my being and also to those I know of, without them I wouldn’t be here.
Yasmeen: Mo thank you so much. You are an inspiration, keep it up. We wish you good health. Thank you for sharing the story.