Michael: My name is Michael Coates. I am a former fire fighter, but I am also a former soldier. It is the stories from the individuals within this military community that I am desperate to document. The word warrior accurately describes our next guest. She followed in her father’s footsteps and at the age of 16, joined the British Army. After servicing in some of the most hostile environments on the planet she now faces her hardest battle. Her battle with Cancer.
Episode 28, Mandy Islam, this is Declassified.
Michael: Mandy, what was childhood like growing up, because your dad was in the military ?
Mandy: It was really great fun. We lived in Germany for 6 years. It was a really great social culture. I think just going to the local pub on a Friday afternoon The Pig and Steak and everyone would be there in uniform and all the kids would be running around and foraging in the woods for wild strawberries. It was just absolutely brilliant . It was, what I think everyone imagines what childhood would be like, a bit of The Famous 5, but with the fun of the service life included.
Michael: Yes. There is so much positives, especially with the kids. Our community have been going away recently, and they always have, but that unity of it especially with the kids growing up. Were you always with the same group of friends?
Mandy: No, so we moved every 2 or 3 years. Our dad was bomb disposal in the RAC. So, there were times we had dad there and there were times that we would simply not see him and times when you did not know if you were going to see him again. It was a really strange, strange place to be, and young kind of accepted it as a child as if daddy did not come back it would kind of be okay if daddy does not come back you didn’t really understand what daddy not coming back meant.
Michael: Where did he go away, Northern Ireland?
Mandy: Yes. He spent a lot of time in Northern Ireland
Michael: I bet he has some stories to tell?
Mandy: Absolutely. Offer him a dram and you might get one [ laughing ]
Michael. But childhood and that service life did not discourage you from joining. So, you joined ’97. You joined the REME ?
Mandy : That’s right. I wanted to be my father basically. He was my hero on so many levels. A guy who would put his life before someone else’s. He walked up to what was going to be a bomb , a device, and he defused it and not always with robots some he had to do by hand with the tool kits. He was a remarkable guy. He did the M6 job. I think it was back in ’97ish. Where, he climbed scaffolding under the bridge in Birmingham and defused a set of combat 95 and defused with a handheld toolkit at height. He has done some incredible things.
Michael: You are proud of your dad?
Mandy: Yes, absolutely. Even now. He is my legend. I would do anything for him.
Michael: So why the REME?
Mandy: I liked to with a car. One of the first things I learned to do as a child was change the brake shoes on the car Probably again because it was something I did with my father. I wasn’t one for dollies or learning to cook or do girls stuff. And I am still pretty rubbish at all the girl’s stuff now, but I was up for climbing trees, foraging and mending things I think it was because I leaned more naturally into my father’s side.
Michael: Your dad was the role model ?
Mandy : For me absolutely. Absolutely.
Michael: You have had a real interesting career as such, but we are not going to focus too much on that today. You then left the REME and joined The Intelligence. Why did you do that?
Mandy: Again, my dad suggested it would be a good idea, so I took it up on him. Not actually knowing much about it. It was hilarious. It was my first ever drive after passing my car test. I was several hours late. The alloys on the hired car were trashed but I got there, and I was exhausted, but I obviously made some kind of impression and got in.
Michael: Did you deploy with them ?
Mandy: Yes. The best ten years of my life. I think the ones that stand out for me apart from Northern Ireland and Bosnia. Would be Iraq you know twice, 2003 up in Al-Amarah and then 2005/6 in Basra Palace. But Al-Amarah was just insane.
Michael: When was that? What Telic was it ?
Mandy: 2003. Just as Telic One was finishing. Just as the war fighting phase finished and then I went out in July and straight onto the Majar al-Kabir case.
Michael: Basra Palace your next tour ? We are not going to go into it too much as you are still serving but after that you went for your commission.
Mandy: That’s right. I kind of got bullied into it would you believe it. [laughing ]
I did not think I was commissioning material, but other people did. I almost thought after in particular 2003 a pretty tasty tour I was treated as a rifle man. I was out on the ground all the time. Either hanging out the back of a helicopter having some interesting exchanges with people who are not as friendly. I think actually getting to be a soldier and do the soldiering role was phenomenal and particularly at that time when you did not have ladies doing roles like that. I think because I had quite a close relationship with the officers because they allowed me to do those things, I also got to see a different side of the Army. So, I was kind of half in the soldier cadre and half in the officer’s cadre. I think I quite enjoyed seeing some of the best people who are currently still serving in The British Army today working in such a stressful and operational environment. One of my role models a chap Brigadier Tom Bewick is still serving. Phenomenal. Coming off the ground and seeing that guy work in an Ops Room when things were going quite crazy in Al-Amarah was such a big inspiration. I thought if I could be just a quarter of that guy today that would justify my existence, that kind of tipped me over into that area.
Michael : How does it work when you go for a commission. Because then you joined the RMP after that. How does that work because you did not go back to Intelligence?
Mandy: Because I was told some fibs [ Laughing]
Michael: Were you ? [ laughing ]
Mandy: Basically, a chap who will remain nameless said “come on Mandy You can this do some great things you will really enjoy it.” Being a bit naïve despite already servicing. I said yes that sounds wonderful. But I realised very quickly it wasn’t for me. I wanted to spend more time without being too controversial leading soldiers whereas a troop commander spends a lot of time looking at case work. Which you can completely agree with as a police officer that’s what you are there to do.n For me I wanted to take my blokes out fighting I wanted to spend time with them and get them prepared for Operations and really focus on them as people.
Michael: How long did you spend with the RMP?
Mandy: I don’t know, maybe just over a year
Michael: Not long at all. Then you then went to RMC. what was the change then did you feel different when you joined? Were you recap badged?
Mandy: Like I said I knew within a few days the RMP was not for me. But the mess we shared at the time was with the medics. The Medics just got back from Ops in Afghan. They were so motivated so outgoing so many great stories of making a difference for looking after our boys and girls in Operations, looking after the medics that they supported or supported them and also what they were doing out on the ground of civilians so not only those in part of conflict but those whp didn’t have a medical facility they could go to so they were picking up the primary health care requirement it was not there at the time in Afghanistan. To hear so much great work being done it was inspirational. I just thought again if I could perhaps improve or help someone do their job improve and do their job as a medical medial then I would be half way to be a reasonable human being. I wanted to make a difference and I thought they were so worthy of leading. And If I had the privilege to lead them. Then Brilliant.
Michael: We have had a couple of medics on here. There stories are amazing. I have become close friends with one of them especially. And he carries a medical kit around with him. Everywhere he goes a medical kit. There is just an inbuilt need to help other people whether that is the enemy of our own troops it is an amazing thing. And you are still cap badged with them now. Have you deployed in that role now?
Mandy : That’s right. Yes, twice for Afghanistan.
Michael: Have you deployed in that ?
Mandy : I am a medical support by trade. It is very different. It is great . And to have guys come off the ground and come in to see you and just to off load what they have done and what they have seen is a real privilege to be there. To lead people who deal with some of the most appalling circumstances . it is the greatest privilege you could have as an Officer in the Army.
Michael: Explain what your role is ? Let’s say in Afghanistan. Some of the amazing work you do. What did you actually do ?
Mandy: On my first tour I was with 16 Brigade . I was with squadron 2it. But all of my guys were out on the ground doing frontline medical at the time, but they were just doing incredible things. On the second tour I was the Ops Officer for the hospital and as well as the medical regiment at the time
Michael: What years were they?
Mandy: I am rubbish with dates. I can only remember operational tours.
Mandy: 13 and 17. 13 – things were still going on and it was eye opening because it was your friends. 16 Brigade you really bonded with those people who you were supporting. Not only your medical regiment but with the Para you were supporting. So, I was with Three Paras for a bit and two paras when their LO was not available, so you got to work with the different Battalions, and you became really close friends. You worked together and you played together. It was an incredible experience. Particularly, when you saw the blokes coming off the ground, they knew they could come and talk to you. They knew you were available to have a sit down and brew with them and offload what was going on.
Michael: Were guys offloading in Theatre still ? With regards to conflict and trauma? Things at home? What was the kind of feeling?
Mandy: It was whatever was going on their mind at that point in time. Sadly, we had a couple of deaths on that tour and people were up close and personal with those deaths that’s quite traumatic and just want to offload to somebody. They know it’s not going to go anywhere. They are not going to be judged. You might have some words that can be of some use. Very much being part of the role cliché as it is servicing to lead at the end of the day its my job as an officer to make the blokes life’s as easy as possible. And my superiors at the end of the day as well it was up to some officers to come and say do you want to have a hot chocolate and let things go.
Michael: The pressure of leadership can be so great. Sometimes we forget that from as far. Leading people sending people to places. Especially in places like Afghan so traumatic and chaotic in certain respects as well. Did you grow because of Afghanistan? Did you become a better person because of your experiences?
Mandy: When I was on Herrick 13, I learned so much about the value of the military family. It was a really close-knit group of people and I still keep in contact with a lot of these people today and that is a real privilege. I also think maybe as a young trooper and young captain you are a bit arrogant so you walk the walk and kind of do what you think you should be doing to fit into the environment you are in. 16 Brigade is a very proud environment and incredible capable environment and that’s what is closest. In terms of growth, I think it is the cancer bit that made me grow as a person as it stripped me away of my identify so I had to rebuild myself of the back of that. I learned a huge amount from that actually.
Michael: So, let’s take us there then? So, you were out running with your dog. When was that 2015 ? Take us from there then?
Mandy: So, Frederick my little monkey poo who is a French Bulldog. I didn’t want him to be a portly apartment dog. I wanted him to be capable of enjoying a happy physical life and we were doing a fartlek session between lampposts. He just stopped to look at me as if to say mummy do, I have to. I put my foot to the side, and I felt some sort of contact, but it wasn’t a snapping or a bang or any noises or anything like that. No twists. And I kind of carried on running and carried on ignoring it for as long as I could basically. I moved 7 tones of soil and gravel doing a garden project. Sadly, I couldn’t carry my sisters coffin when she died because it was so painful. So, then I got to a point when I thought enough was enough. Four months down the track.
Michael: So, from initially hurting your foot and going through everything with your sister ?and just living with the pain.
Mandy: It was in the knee area.
Michael: And then what? What did you do ? What pain in the knee? Did you initially just go to get it checked out as a knee injury?
Mandy: Literally I did all the things you try to do ice compression, ibuphen,elevation, and then I went to the Doc. And I said look doc my leg won’t work can you do something. It was hot and red and painful to touch. So, he organised the scan for me. When I went for the scan the people who were looking at it said what have you done to your leg. I knew something was going on, but they wouldn’t tell me anymore. They referred me to an Orthopodas we thought it was a bony type injury. He was really really cagey in his language . He would not say anything I could understand despite when I asked in different ways.
I asked for a copy of my notes and a copy of my images. And I went to the car. Hobbled to the car basically. I opened them up and called a friend of mine who is an orthopaedic surgeon. And just said Scotty what do these words mean. He said to me “Shit Mandy that’s cancer.” And I went “Mega.” He went “Why ? whose notes are you reading?” I said, “Mine.” He said, “Where are you?” I said, “I am in the carpark of the General Hospital.” He went into the Welfare side of it. Being a singly I had nothing to do but go to the block and mull it over. Leg pain and now I’ve probably got cancer and being code red to a different hospital.
Michael: Why did the doctor not tell you ?
Mandy: I think because he was not entirely sure himself. It had to be properly investigated. Biopsies and stuff like that. Not many people see conditions of multiple melanoma and presents itself in different ways. It is a blood cancer basically one of the plasma cells has gone wonky it can show in breaks and in the spine or ribs it presented in my leg.
Michael: We are not here yet. When did you get the official diagnosis?
Mandy: The diagnosis came in May. But I already prepared myself for it because I had the phone call with Scotty, so I knew broadly I had cancer. I didn’t know which type of cancer. Option of two. One was curable. One was not curable. So, they asked me to choose my hospital. So, I chose my hospital based on the non-curable cancer so the worst-case scenario basically which, it turned out to be right.
So, In July by the time I got there and stood in front of my professor had the interview about what was going on and to consent to chemotherapy. I left and I went to get my drugs from the pharmacist. I just said to my specialist nurse and I said, “Am I going to die?” and he said, “That is one for the professor.” So, I said “okay when am I going to die?” And he said, “that is one for the professor to answer too”. So, he organised us to go back in as soon as she finished clinic, this afternoon. So, I said to her “Am I going to die?” She said “Yes. 2 to 3 years at worse 7 years at best.” I went “thanks very much” and I just took myself to Charlotte Street. We opened a bottle of fizz and chewed it over. It was quite an interesting moment to knocking your leg to finding out you have something that is going to kill you.
Michael: When did you tell your dad ?
Mandy: That’s a really good question actually. What I did for that was I rehearsed to what I was going to say. In the car the next day I rehearsed all the way driving down to Somerset what I was going to say as I did not want to install fear or panic. I didn’t want anyone to feel they didn’t have no control and I did not want them to feel we were not going to do something proactive or positive. Once I got my head around what all that looked like. He opened the door. He knew something was wrong. He said, “What is it chum?” as he calls me. I said, “Dad that leg pain is not good news. It is cancer.” So, he was devasted. Devasted.
Michael: How did he react?
Mandy: Tears. As you would expect. There has been a lot of them since. Because how does a father deal with his little girl dying? It is not in any parents wish to be putting your child in the ground and in particular as my other sister, Mo, had passed a couple of months before, I was diagnosed, they had already had quite a run of it.
Michael: It must be horrendous. Your attitude has not been horrendous but been has been from afar has been inspiring. We will get to that shortly. What was next in this kind of journey? Where do we go from that initial ? What is it called when you told exactly what it is? Is that diagnosis? Prognosis?
Mandy: Diagnosis when you are told what it is. Prognosis is the outcome, of it all.
Mandy: I went for treatment the drugs that are used the haloimide and dexxx sterod…. The first month went relatively well and I was super small by that time. I think I had lost weight about 54kilos. I had lost about 10 and 12 kilos.
Michael: Blimey. Was that because of the medication ?
Mandy: Cancer. Because of cancer. I rapidly lost a lot of weight and then by the second month I couldn’t stop eating and then the steroids as well I was bursting out of my clothes. By the third month the concoction of drugs started to mess up my mind. They call in chemo brain. I sometimes lost the ability to speak. Sometimes my vision would go. Sometimes I just could not function as a human being. I would take Freddy for a walk I couldn’t drive anymore. I couldn’t work. I lost all my confidence my value my purpose my identity I was stripped of everything as a human being. It was the first time I had ever been stripped of myself and It was the first time I had ever had to do with what some people call black dog days. Metal health. Because I was always glass is always toppers and run-around at max 10, going to the next party and working my socks of in between and then all of a sudden, I just had nothing.
Michael: Was that because of the vulnerability of it all ? Was it the stark realisation of what was going to happen, Was it a mix of everything ?
Mandy: No. I was never worried about dying. I am still not worried about dying, yet. it was just the effect of all the drugs I was taking. Because you just can’t make sense of it all. Your brain is functioning and then next minute it is not. Your blood is itching, and you want to rip your body apart . One minute you are constipated the next minute you can’t walk 5 meters without going to the loo. It is a real savage.
Michael: How were the drugs administered. Was it daily? How does it work?
Mandy: During that regime it was every week in hospital for an injection that was administered by the hospital and then the thalidomide and dexxxxin a tablet form and injections as a well at home. I literally rattled, my drawer at side of the bed was just stacked with medication.
Michael: With regards to poor mental health as well as good mental health did you have support through that period of time. Not just friends did you have professional assistance.
Mandy: No not all. And this is the really strange thing about it. When people are diagnosed and meeting people who have experience of cancer and life changing limiting conditions, they are all going through a period of adjustments. When doctors tend to tell you about side effects it tends to be a very lean description of what that actually means. They say you might be constipated. Or we are talking about doing bathroom gymnastics for rabbit poo. It’s not like constipation you know about. It’s not like diarrhoea you know. Your shitting out the inside of your gastric tracks Illuminatus green water basically. It is such an extreme it is not a nice place to be. The fact is people don’t tell you what you are going to experience. The second part is you have to get the balance right for medications to help you. I went through 5 types of anti-sickness medicine before I go to one that actually worked. Friends were actually incredible they used to make a real fun time of chemotherapy what they did not see when I was a bit more on my chin strap.
So, when it came to my parents because I had to move back home for a while. I did not want to burden them with what I was going through because like I say my sister had passed so recently and they were looking down a barrel at another one going. I didn’t want them to worry about me I kept it in quite a lot. I started writing my book then I think probably in part to capture all of these experiences because it was good to get it out somewhere. It was a way of talking about it without actually having to trouble anyone with what I was going through.
Michael: Yes. It is almost self-medication but in a very therapeutic way, by writing. Was it therapy for you ?
Mandy: I didn’t actually see it as therapy. It was a case of having a conversation without having to trouble someone. You know. For me if I was to say something was therapeutic, I would say it was taking a car out for a spin or out on the hills I like that. that for me is more therapy. Yes, because you can just disconnect from everything. The thing that is trying to kill you is in your body. You can’t shoot it. You can’t bayonet it. You can’t strangle it. It is something you have to love as much as your healthy self and try to support the rest of your body while this thing is trying to kill the good work you are doing.
Michael: We are near Tottenham Court Road now. We talked about something before we started recording. Can you talk us through that again?
Mandy: Yes, it was just before I went in for stem cell transplant. Which was a really big event for me. That was my Everest. My cancer journey for the first part I modelled it against Everest. I went up the south route and the various camps were various treatment regimens I had to undertake. My Everest was the following day or summit day was the following day and I remember I was sat in the cinema watching Bond and my body just shut down on me. It just said I have had enough. I couldn’t remember how to breath. It was a really strange experience. One minute I was breathing the next minute I physically was not breathing. I had to talk my organs almost into breathing. You need to breath in through your mouth. Your lungs you need to inflate. You need to breath out . you need to keep doing it. And when I came out of that it really hit me that I think my mental health had had enough. It said look you can only soldier through so much you have to get this out and get some kind of professional help. That’s when I booked into hospital the next day. I need to talk to someone professionally because I think my body had said, enough is enough.
Michael: You believe that was total psychological the not the shutting down but the ability to say keep breathing?
Mandy: I can’t explain it but I think it was because you crack on you do the best you can and because I wasn’t really showing this a great deal I was internalising a lot of stress all the time and I think basically my body and someone out there can tell the medicalised view on all of this but basically my body said can’t tell you to keep doing do this anymore my body was saying..
Michael: Amazing. Then post that you then went for help.
Mandy: Yes. It was hilarious. He said you are the wellest patient I have had. [ laughing ].
It wasn’t really helpful at it. It was helpful in the way. I mean it was only a counceller. It was just a case I said stuff and he listened. He said Great you are the wellest person I have had. So Do you want to see me again? Or not? It was odd.
Michael: Did you then pursue mental health intervention. Was that it?
Mandy : yes
Michael: That is incredible. It just seems baffling to say you are the wellest person I’ve got.
Mandy: I know but I think that just shows there isn’t a facility for people are going to go through that process which we know is going to be very traumatic which is not a smooth ride so nationally there is a bigger problem as the facilities just simply do not exist.
Michael: Stem cell transplant. You said was going to be such a big deal. What did it entail? Why was it being kind of being implemented? Why was this? We had already gone through chemo
Mandy: Yes, I did the 4 cycles of the thiladmide and decksand then 2 intensive chemotherapy session which is 5 days at a time 24 hrs a day, so you are hooked up to a drip that sleeps with you that showers with you. Injection once a week, 3- 4 bags of chemotherapy put into you every day on top of the IV drip and that is when my hair fell out. So that was pretty toxic on the whole body.
Michael: That was 2016?
Mandy: Yes Jan 2016. [pause]. It took about a year for my body to get back to normal after that. It was really quite traumatic. But for me physiologically I had, and I knew getting down the mountain was the hardest part of the journey, so I prepared myself to get back down. I was pretty much set up for whatever that looked like. I was just delighted to have got to the top of Everest. And for me making sure I got off the mountain and getting off mountain to get back into work to be like what life was like before
Michael: stem cell transplant. Is that what you just mentioned there or was that purely chemotherapy.
Mandy: This stem cell transplant You get a high dose of melanoma that basically burns you inside out. So, on that your kind of sucking ice-lolly to try and stop the burns and bleeding in your mouth and then it just burns you right down to your bottom so I could not control my bowels for about a year. It was really really hard going.
Michael: Does it ever feel like you want to end that. It just sounds horrific. Not suicide . I am not saying that. But what I mean is This is enough now.
Mandy: That’s how I felt like going into my second transplant. And I only had that in Feb this year. So that’s a month and a half. I remember getting ready for the transplant psychologically. I started to prepare myself for it because I knew it was traumatic and you know for military listeners it is like going out on patrol, but you haven’t got the fire team and you haven’t got anyone in-depth in support. You haven’t got any overhead, but you know you are going to be blown up. I don’t mean that to diss anyone who has been blown up. You know you are going to be hit by something you know it’s going to buy but you don’t know how badly you are going to be hit. You don’t know what the recovery journey is going to look like on the other end. So, what was really hard going was I had to make peace that I was going to put myself through that again.
Michael: That was just now but the first one was two years ago. In between that, what was life like?
Mandy: Yes, so I got into powerboat racing. I wanted to test myself because I had been through so much trauma, I wanted to do something that was a little bit extreme because I had lost Mandy Islam. I did not exist anymore. I had been stripped of everything that was important to me less my friends and family. But like I said I did not have an identify and I had to build that up from scratch. So, for me what did I have? I had been in the army for 16 years old and that’s something I hold incredibly dear. What was my purpose to do my job well? Could I go back and do that. Absolutely for me I needed to have other interests that wouldn’t mean I just lived to work. Therefore, powerboating was the outcome of that. So, when I am well enough, I can go back in gym and building up strength again and hoping to do some world records in a nice 40-foot power boat. Which is a little extreme
Michael: is military supported you through that self-funded?
Mandy: The guy who owns the boat is a little bit of a philanthropist and works in the disability space. The whole purpose about doing the record attempt is to raise awareness about life limiting conditions. To show people that life does not need to finish or end just because you have a diagnosis or prognosis. To show to people that think Disability is just someone in a wheel chair it is far more complex. Far more into society than you know. Being someone who wore a uniform. Who wore a race suit is a good way to do that in a 120mph billboard basically?
For me if I can support people and other people on their life journeys and for those not sure on what disability looks like I have done my job.
Michael: What does disability look like?
Mandy: It’s everywhere. It’s everyone. Everyone has something going on at some point. One there is a legal definition of disability that it is a physical or romantic impairment. To conduct their normal life business.
Michael: How has it affected you now? Let’s say we are still in 2016 for the purpose of this recording. At that point where you are feeling psychologically? how were you coping with it? How far into the future were you looking? You said you were coming down the back end of Everest. Had you felt you had achieved?
Mandy: Gosh yes. I was cloud 9. I was so proud of my body on what it had managed to take me through. When I had no hair, it was a visual clue something was going on there. When my hair came back people just treated me like a normal human being . But when you are still unpacking the trauma and you body is not playing ball and you are trying to run at the same speed as everyone else it has a lot of challenges.
Michael: We mentioned work a second ago. At this point 16 17 and most of 18 were work being supportive. Were they adapting to what was happening to you? As in your boss, your direct boss, and the work you were conducting. When did you go back to work? There are a lot of questions there sorry I am just throwing them at you.
Mandy: I went back to work very soon. I think I had June to the March away from work and in that time, I also did a month fertility treatment which is a very grim experience as well to be fair and then the chemotherapy then the stem cell transplant. You generally take 6 months after stem cell transplant and I was back in 2 months. So, military in some ways that I needed to get back into that to feel like a human being again. In terms of employers it’s a really tough one for then because they don’t know what they don’t know. So, they will have commitments and competing priorities and things to do and if you are running at the same speed then one might be seen as the slightly weaker link in that chain. And that’s hard for managers when they are having demands put on them but as a Huma being and as a soldier there is appoint where the human has to come first before the soldier. Where you can actually learn to be yourself again and learn to do your job properly.
Michael: Was your work place facilitating that? Was their empathy towards your situation ?
Mandy: It was a real mixture people don’t know what they don’t know people always I think want to do the right thing but whether that actually translates into the right thing is a different question and doing the right thing for who. Because like I say they have commitments and things they need to do. Whereas if you can’t meet their expectation, they might have an issue with it.
Michael: Everest is one thing , metaphorically, Everest iwas there. That’s where the purpose and meaning driving . Mandy get up get down. When did that translate into the powerboating and has obviously filled a big gap as well? When did and I am focusing on work because it is an issue a lot of people face? My mum was really impacted by work when she got cancer and now she cannot work. It really impacted her. Your ability to be able to go back to work now. I am going to fast forward and bring us back as well. Your ability to go back to work and have that purpose before relapse and in between treatments was that a big deal. Because you write policy now?
Mandy: I worked my way through. After I did my stem cell transplant, I then did two years monotherapy which is just a maintenance chemotherapy day. One every two weeks. I worked through that to. Go into chemo on a Friday in the afternoon and go back to work afterwards. Nip out, get stabbed and go back to work. No issue at all. I worked through my radiotherapy as well. I’ve not had a lot of time off in the big scheme of things to treat a very difficult to treat violent cancer. I have a very aggressive cancer.
Michael: What is the official name of the cancer?
Mandy: Multiple Myeloma. But I presented in my kidney and in my knee and to have something outside of a bony area and in knee is unusual as I said before it is normally in the spine and ribs that it starts to present.
Michael: Excuse my ignorance. So, is that blood?
Mandy: Yes. Very similar, bone marrow.
Michael: A friend, I had at 9 got leukaemia. He died when he was 12. It was a real ( erm ) thinking about it now he was just a little kid that drove me in my early adult life to raise funds for children with leucoma and then volunteer with kids with life limiting and serious illness and then my mum having cancer as well. And her husband died of, I think, a myeloma as well. And that’s just me. This affects so many people within our community, whether it’s the military, whether it’s our family. Yes …. [pause]…
You relapsed in August 18 take us to then, and what do we mean by relapse?
Mandy: Okay then so I suppose I got what I asked for really in some ways. So, after I finished two years of monotherapy and we thought that would be me free for a couple of years and would not have to worry about it for a couple of years. The consultant said to me we should think about having a scan to make sure everything is okay. If cancer is able to survive what it has had in the let 2plus years at that point and then good luck to it. Sadly, I think it was listening as a month later I was I was on train to Scotland to go to a party. I got out of my chair and I felt pain in my knee and I just though crap that’s cancer pain, so I knew at that point on my way up to Aberdeenshire that cancer had come back. Al credit to the NHS called up on a Friday afternoon when I discovered this pain called them up on the Monday and said I’ve got these types of symptoms can I get in for a scan please. They organised the next day and I had the results by Thursday. They are super quick they are really really efficient. People affe don’t tell you what is going on they dress up language. No one used the word relapse. They said we are going to do this we don’t want bull shit we want clear language that we can understand he gave me this treatment regime. Started to fill out the form. Hang on a minute I have 2 and half years of x drug surely by now we think it does not actually work. At which point he said Well that’s a good point so thanks very much so now I have to pay consultant to my own health because our haven’t bothered to read my notes and then he gave me a different treatment regime which he didn’t have time to look out what was going on in my own body to see what might be right regime for me I had to do what was the next best thing and off I went.
Michael: I am just jumping in there on the important of not always settling in what a consultant tells you. Questioning something. We can politely question if you are not certain or ask why it is being done. Is that something you have seen?
Mandy: I do it all the time. I am a real thorn for this and a positive thorn for this. For example, the fertility issue. I didn’t want children at the time I was single at the time it was not even in my mind having too much fun and a friend said you need to think about fertility. It was not even a doctor; it was friend who said it to me. When I spoke to the consultant about it the consultant was horrified. Thankfully my professor said give her one month go, and they were able to harvest 14 eggs at that time. They were good quality eggs. This was before the chemotherapy.
Michael: Brilliant before chemotherapy?
Mandy: Basically, it was a case of challenging the consultant who said absolutely not you are barking mad to have that professor view who said I will give you that one crack. I was literally full of needles . mix and potions and getting these eggs at the end of the month it was wonderful it was, and they all did it . they did it all with the funding not in place. They were fantastic that was my first challenge of them. My second one was they wanted to do radiotherapy to my leg. And I said what is the side effects of this and they said it would destroy my leg, and I said categorise it will have no function. I can’t afford to have no function in my leg. I am a soldier I need to have function in my leg give me a different route they went off and gave me a different route. That was another challenge and then After relapse they gave me treatment which clearly did not work. As a patient you have to take ownership as you are one patient in many. It is not a criticism of one consultant. It is the fact it is a very busy NHS, and no one knows you, like you, so be your own ambassador, I think.
Michael: I think one way I have learned over the years and not on the level of you at all is that guys who I have spoken to on this podcast and friends is to question and I think it is an extremely value snippet of information you have given there – no one knows you better than you.
That second stem cell transplant so recent Mentally, how did you prepare? I know you just touched on it a second ago, but did you actually do anything as in meditation mindfulness? How did you prepare psychologically?
Mandy: I self-talk. I will self-talk myself through things. Or talk myself through things I will rationalise and get to a point where I can make peace with something. And I will think everying I can do in my power to make that journey as palatable as possible and so for example I had to work or not have to I chose to work from home for the first couple of months before the stem cell transplant because my immune system would be low or nill and then low and then it was cough season and the last thing I wanted to do was put myself into an environment where I would be suspect to coughs and colds and take myself out of any environment where I could get bugs. And part of that was there was No bars, restaurants, podcasts because we had to cancel a couple of times. Not seeing anyone at all I really put myself on lock down I really didn’t want to be anything but in the best possible shape for where I was at that point in time and where I was going. Because treatment is one type I want to know broadly when I am doing things so can plan life. I don’t like things happening to me so I like influencing what I can do. My consultants I am sure love me for , I can have them planning things out in detail and the staff planning things out in detail because I want to shape what is happening to me. I don’t want to be hostage to someone else plans outside of my control because cancer has control of so many things already.
Michael: there is one thing you take control of a lot and that is the impacts on other people. Certainly, the intention in writing policy for those life limiting illness within the military but also on social medias well I find you a – pause – not to blow smoke up you a real shining light on social media. A real positive but brutally honesty. I think there is an honesty that comes through with that as well. Whats the future. What’s the short medium long-term future for Mandy?
Mandy: Well so I have a donor stem transplant in May. So, thank you very much my 20-year-old male who I won’t know who he is until a year time. If that works, then I have a chance of a quantity of life. The quality I don’t know yet. But the quantity of life and that could be a reasonable period as in get to 50, 60 or something like that. If I don’t, I am a little bit buggered is the honest answer. I think I am now in year 4 so possible only got 3 years left, tops. You can obviously never say never. But I am running out of treatment options and there is only so much the body can take it. And there will be a point where I will make a judgment on whether if there is a quantity of life. there is no point living if its shit. I have seen plenty of people in the cancer wards to use my analogy before, being pushed up the mountain but they don’t want to be there but its everyone else pushing them up it and they are jolly miserable and there is a time when people can say I’ve had enough it’s time to go back down and enjoy the time I have.
Michael: What do you fear now ?
Mandy: What do I fear [ pause ] Don’t think I fear anything. I would like to live out live my dog. I know it sounds silly, but he is my child. But Freddy is four and a half now I would like to see him grow old. I don’t want to put my parents under any more stress and strain than they have experienced already. I think I just want to do all I can with what I’ve got for the benefit of other people. Being honest is a huge part of that because I do look at cancer very positively and I do see it as a good thing, and I would not change cancer for the world. Sometimes It would be nice if it was not as severe as it was or is, but because I have been dealt the cards I have, I can crack on and make the best of what I’ve got. I am a real opportunist so if I can help others on their journey if they are carer or friend who just wants to know I just want to do my job as a human being before I check out.
Michael: You mentioned a book earlier on. How far away are we from that ?
Mandy: I have had new content to write over the last 6 months [ laughing] . I ended up ripping out a lot of the front end of the book so I didn’t want the content being overshadowed by the front so I will insert a bit about of me growing up into the book at different places but I really wanted to focus on the here and now So I am now writing the last six months so basically from relapse to here and then we will have the next transplant to cover off and hopefully, hopefully, it can end on a positive note.
Michael: Perfection as well. We need it out there. We need it out. Is there a working title or are we keeping quiet about anything like that ?
Mandy: I would always be interested in people views on this. At the moment I am thinking about just calling it Cancer Warrior Diaries because it is what I am known as and it is as it is almost a diary or a journal of what I have been through which will inspire and help other people on their journeys. Even if it by saying oh gosh I recognise that within myself or these things have happened now I understand them better. Because when I gave my first draft to my father to read, he came through in tears and he said I did not know you went through any of that, so I hid it all from my parents pretty well. So, the first time they learned about how much I had gone through was when they read about it.
Michael: With regards to armed forces personnel serving or former, what’s going on with regards to the support to The Policy you are writing. What is the future for someone like yourself? In a situation like yourself. Is it growing ? Is the mentality around life limiting serious illness changing in the military what does the future hold with that?
Mandy: It is changing there is a lot of appetite in the MOD to do the best that we can for people who are diagnosed and also the carers as well which is important. We now have an Armed Forces disability champion. And we now have a network the Chronic Condition and Disability. Candid Network for people diagnosed and carers who want to learn more about it. The Policy is going to undertake its second iteration over the next week following having feedback from the single services and other stakeholders and hopefully turn it into something really meaningful and really helpful for those who would benefit from this. With cancer likely to be 1:2 in 2020 if someone is not diagnosed with cancer, they are supporting someone with cancer, so it is a real challenge up and coming challenge for employers across the globe really and the armed forces is a big part of that.
Michael: Mandy it is amazing speaking to you. I really can’t thank you enough for coming in and sharing your story with us. Thank you very much.
Mandy: My Pleasure, thank you for having me here.
Michael: We will leave it there