Of Engagement

image

For Mark and Georgie

Today was a good day
a filled with warmth day,
a tripping over smiles day,
a sparkly diamond ring day.

A day for sharing food,
stories, laughter.

Today was a commitment day;
a day for I love you’s
spoken over and over.

Susan Jane Sims,
January 3rd, 2015

For Georgie, I want this to be my best blog and most self-indulgent blog. Here goes.

Firstly I love her unbelievable amounts and she’s made me happy, despite the cancer, everyday I feel it’s great to be alive just because I know she’s alive too, let alone now my fiancée.

Back in February when all this began, I did not think I would survive until now. I’ve surprised myself in many ways. I’ve always had belief in myself and that’s important, and this is the story how I surprised myself most of all, by finding the love of my life, the best person in my life and now my fiancée.

As I went on the train of fundraising, spreading awareness, and well inspiring. What’s always surprised me mostly about the blog is actually how some of my closest friends didn’t read it, but through word of mouth and looking at the handy wordpress stats, a lot of people do. In time they now all read it. Without me even knowing it a girl very similar in age to me had read it. She was drawn to it and understood what makes me tick like no one else has. She came to my lecture, dragging one of her friends along, but she would have gone on her own. I’m sure she would have, she’s like that, Georgie’s like that. She knows her own mind, doesn’t always communicate it but she knows it. She wanted to see the man who was defying the odds and trying to do his little bit for Cancer Research UK, before he died.

I guess it’s weird how life turns out. People say “it’ll happen when you least expect it” this was about as unexpected as possible. I remember thinking before my talk, Leicester has been good to me “will I meet someone tonight?” I actually shook my head at myself, I didn’t have much hope, I have cancer. The day started badly too, I was waiting for a lift up to Leicester from Matt. I guess it was optimistic to think he would wake up on time after a night shift, but he had reassured me. Instead he woke up to a very angry me, who he mistook as a delivery driver because of me in my scooter helmet angrily ringing the intercom of his flat. I was livid, there was a chance I would be late now. I was fuming most of the way up. It was embarrassing to turn up late to your own talk. I arrived twenty minutes late or so and started in a rush. After a couple of slides I started to slow down and get into rhythm. There was a deathly silence on the slide where I highlighted that I had, what I feel is, “The Worst Cancer”, in metastatic malignant melanoma, due to it’s aggressive nature and up until recently no treatments.

After my talk in Leicester, I went to the Lansdowne bar to meet up with old rugby lads and a few attendees of the talk. I was drinking americanos to keep focussed. We then decided to gatecrash the Medical Finals after party before the finalists went off for their electives. Quite a lot of people came up to me that night as I was expecting. Some who recognised me and some whom I’d forgotten in the bar crawl haze when I’d probably met them before. Actually one of the first girls I spoke to, all bit walked over the last bit of my confidence, basically being overly sympathetic and telling me how one of her patients in her OSCE (objective structured clinical examination) had cancer and it was all very weird that I had it too. I felt more like a patient than a person. I spent the next thirty minutes or so catching up with others, politely declining many drink requests. In the middle of the room, two women came up to me. One I recognised, yes she’s the one who took the photos at the infamous freshers’ week fancy dress bar crawl, the fancy dress seemed like a good idea at the time. However after endless “detagging” on facebook after one of my consultants added me on Facebook, because I felt the humour may be lost on them, meant it wasn’t such a good idea. The ex media secretary started chatting to me. Her friend however caught my eye immediately. She was naturally beautiful, a tightish blue dress (still my favourite), radiant blue eyes and sleek dark brown hair. A dash of makeup and a cheeky large smile. Great. We chatted for about 15 minutes or so, spreading the conversation between the two of us. She went off I was concerned perhaps I was being too hopeful, but I felt a spark. So I soon moved over to her on the dance floor of Vodka Revolutions. I started speaking to her again. She had lived in South London like me, hmm, age. She said second year. Bit young, I do have the cancer. So “how old are you?” “oh 26”. Great, a graduate medical student.

Just a couple of months younger than me actually. There it was a similar laugh to mine, a hyperventilation laugh. I really felt that I was in, but was I? Apparently her friend had spotted us from a distance and thought something was going to happen. I wish she had told me, my heart fluttered. I didn’t want Georgie to get away. I found out she was going to the union too. My friends, being male, were better organised at getting out of the door of the bar and we convened outside. Hmm, she’s stalling waiting for her friends I thought. I was wary of shafting the guys if I didn’t spend time with them, but I knew they’d be supportive. They waited for a bit but quickly headed off when she finally came out. Pretty much on her own. She seemed to know, at least by face, most of the other people walking up to the union. We walked up on New Walk, Leicester’s pretty pedestrianised walkway that runs from the centre to Victoria park. We strode off, Georgie basically ignoring everyone else but me. Conversation was effortless. I remember, we talked about the fundraising and the blog. She’d read both and donated, furthermore she’d cried at the talk hidden at the back right. She was funny. We started talking about relationships, I needed to know she was single. It was not coming out. She told me she wasn’t looking for a boyfriend, at least that’s how I remember it, I remember feeling slightly wounded. Was I wasting my time, did I really have a chance anyway? Eventually just as we were turning onto the campus I said “Are you single?” “yes” although it may have seemed obvious by then. At the union were separated quickly she went to the toilet and caught up with her friend. I grabbed my friend Kiran as soon as I saw her at the bar. Kiran started talking to her. Oops, talk to the other one mate, I thought. The group moved slightly and I weeded in. We got drinks and then headed to the dance floor. Despite not being drunk, one thing I’ve never been self conscious about is dancing, and I’m pretty woeful. Stop thinking about it and just have a good time. We danced and eventually we kissed. It was soft sensual and lovely. Around me the lads were all high fiving. Soon after Matt whispered in my ear “so I’m forgiven then” I replied with something like “yes but you’re still a twat”. We danced, then Georgie brilliantly suggested our own version of tequila slammers, so we asked for small lemonade’s but instead they gave us big cups of lemonade with ice so we downed them anyway. We danced for ages messing around and laughing until four in the morning.

This is how we met. It was as close to love at first sight as you’re going to get, but as Georgie likes to point out, she loved me before she met me, plus she said it first. But I love her the most so that makes up for that. From there on our overarching desire for each other has pulled us through. We met up again for a coffee and organised a date the following weekend. The coffee was in fingerprints, Georgie remembers her cheeks hurting afterwards because she was smiling all the way through. We were there for so long when we left Georgie text me to go back, because she’d remembered that we’d forgot to pay. The following weekend we got a boat from Waterloo to Greenwich, to go to the planetarium. It’s been a fairytale.

Georgie has been more than just a fantastic girlfriend, she’s had to give up something so vital, so inane to be with me. A normal life. I’ve told her to leave me, because I’ve felt at times she’d be better off without me, she could find anyone, as she’s very beautiful, fortunately for me she finds me too adorable. She gave up a lot to go to The University of Leicester to do medicine and by dating me has risked it all, I’m understandably emotionally time consuming. It took me a long time to get over the self conscious feeling of being ill, for Georgie it just was never an issue, she feels life can end any point and we should just live it and not ignore our feelings. She loves me and that’s it. She’s also given me loads of happy memories, my favourite photo of us is one of us wet and cold climbing up Goat Fell, on the Isle of Arran in unsuitable waterproofs both getting rather cold. We’re both smiling, no matter what we can always make each other smile and laugh.

But I’ll never truly understand what I’ve given her, in my times of insecurity she’s told me that she wishes I could see me through her eyes. Then I would understand. I think that’s probably true. We’ve shown each other what love is. It’s rawness, it’s beauty and it’s fantastic. By going through more as a couple in eight months than many do in a lifetime that initial flourish of love has gently simmered and I love her even more for it, if that’s possible. She also gives me the unseen things, a sense of purpose, a reason for living. In some ways this has been difficult for friends and family to see, there will be times when I’m quite introverted (I’ve got a lot to think about) but then be much more animated on the phone to Georgie. This is in part as she brings out the best in me, but for her I want to be the best. I’ve wanted to be that bear who inspired her to go to the talk in the first place.

It is of great regret, that I did not meet Georgie sooner, we’ve actually thought of times where we were pretty close in proximity over the years. Budapest (that great city once again) and a University of Leicester open day, I was a tour guide. If you ever fall in love, embrace it, it’s amazing. People who are married, say that when you know you know and I knew. I’d been planning this engagement for a number of months, I had hoped to ask Georgie after her exams, but the Dabrafamiracle didn’t see us through. A diamond ring, diamonds fit for a princess, with their inner radiance and beauty to core, I couldn’t think of something more fitting for Georgie. She told me all she wanted for Christmas was me, so that’s what she was going to get, (plus some other things too).

I’d gone to Kent after hurrying down to the Marsden, after my talk at a nursing conference in Birmingham, it had actually seemed like ages since I saw Georgie. My life is so incredibly varied and random with routine being stripped away like a drop of the hat. As every day is that bit different life seems to thankfully to take that bit longer. I’d stopped over at Dave’s on the Friday night to see my brother Matt for a nice curry. Georgie had the car in Birmingham and so drove to Kent, I needed to get the train to be seen urgently at the Marsden. As I’d been told the tumours were growing and Dabrafenib had stopped working.

She picked me up at Tunbridge Wells station and we parked and headed straight to Holland and Barrett for some probiotic tablets. A specific bacteria Bifobacterium was associated in mice to improve the efficacy of immunotherapy and I was desperate to get some. I was being a bit more conservative with a lady in the shop who came over to help us find said bacterium about reasons for wanting it. Georgie just came straight out with the cancer, her reasoning is they may know a bit more, they didn’t but the women was lovely and she went to the toilet to cry. We then went for Georgie’s favourite dish Pad Thai and went for a walk around the park. I’ve already elluded to this by now, but what with the diagnosis was putting pressure on the situation, I was now in the unknown regarding treatment. It would be more romantic to say it didn’t pressurise me, but I was so desperate to do it. It was such a lovely day, the park was hazy in the dimming light but we were virtually the only ones there. I kept thinking why don’t I have a ring in my pocket to give her. We arrived back at Georgie’s, I kept having moments where I didn’t say much although I think it went unnoticed or passed off as me being thoughtful about the cancer. I wanted a second alone with her Dad which came naturally to quickly ask him if we could get engaged. Georgie wanted this tradition and I did not want to let her down. It didn’t come, there was a time I could have gone into the lounge with him alone but I felt Georgie would be wondering what I was up to. I find it hard lying to her, so it’s best not to give her any reason to ask questions. But that moment didn’t happen. In the park I had also tried with limited success to gather what her ring size was. I bought rolo’s and playing with the foil I made myself a ring, emphasising I was just pretending to feel what Dave feels now, as he had just got married and really wasn’t used to wearing bling. I then made one for Georgie and asked her what her ring size was, only with a “I don’t know”. I was quite disappointed it would have made things a bit easier. The rolo foil on her finger wasn’t a particularly good measure so I gave up. With her Dad I was hoping for a moment similar to my friend Matt had, he was out with his future in laws and Rachel’s (his finance) father went to get a round in Matt went up and said just to help him carry the drinks and popped the question then. The problem I had and it sounds like I’m being lame is I was very concerned that that he would talk me out of it, I’m pretty sure Georgie would say yes. After all lets be frank we both have much more pressing things to do, with her exams and me staying well. Worst of all I did not want to leave Georgie a widow but I wanted that change, albeit quite soon in our relationship, of showing her just how much she meant to me, because she means everything to me. I was frantically trying to think of the words for her Dad, saying something like “I really want to marry Georgie and I want to get engaged with your blessing, however I’d be inclined to wait until the disease was more stable as I don’t want to leave your daughter a widow”. It’s thoughts like that which show just how mad my life is. I knew one thing I am totally and utterly in love with her and if that’s not a good enough reason to get engaged I don’t know what is. I didn’t want to hold back so two days later I forced my own hand. I bought a ring. Although not from where you would expect. I had been up to Kingswood high street near my parents for a flu jab and to collect contact lenses and thought I’d go into a Jewellery shop there. The high street has gone into some kind of terminal decline and there wasn’t one to be found, at least not one upmarket enough. So I started looking online and the first place was Amazon, the ring size well I guessed M as it was the average woman’s size and well it’s the first letter of my name, so must be. I won’t divulge the price but it was the most expensive item I have ever bought, more than my TV and my scooter. I was torn between two styles I knew Georgie wanted a princess cut and previously had said she would like diamonds along the rim. Personally I liked the princess cut without diamonds down the side. After a very long time indeed of looking at both these styles and all about the 4C’s of diamonds, carat, clarity, colour and cut. I eventually went for the one with diamonds on the rim, the perfect choice. Time was now ticking.

A few hours after purchasing it I had a call from Amazon, a call centre in Bangladesh it was slightly random and only after he told me other things I purchased did I let on. He was just confirming that I had actually made such an expensive purchase. I didn’t know whether to be offended, but I guess it was the largest purchase of my life.

I went for a walk with my Dad in the hills between Bristol and Bath some of it I had walked before. Being involved in scouting from a young age and more specifically joining a group which trained for the “Ten Tors Challenge” a grueling plight across Dartmoor. So I’d been on lots of the part of the walk before and it’s a great area. We may as well make use of being suburban, the countyside is very close. At the peak of the hill we could see across most of Bristol in front of us and most of bath behind us. On a clear day you could probably see all the way to Clifton Suspension Bridge. This walk was firmly added to the mental list of “things to do with Georgie”. Throughout these couple of days at home I even downloaded the Amazon App just to keep track of the ring. Always saying awaiting dispatch. The more I looked it at the happier I was with the purchase. I liked diamonds in a geeky way, they were beautiful to look at but beautiful scientifically too. Diamonds achieve their brilliance due to their high index of refraction, which means the critical angle is only about 25 degrees which means a lot of the light which goes into the diamond is reflected back out. It’s what creates the rainbows and the shine from them. Also their ability to survive almost anything, their eternity was something I wanted to symbolise the relationship. I wasn’t the only resilient one in this relationship. Georgie was much stronger than she thought she was, she’s a tough cookie, I’m proud of her for completing the half marathon that day and pulling Matt and I around at her steady pace.

I went about crudely planning the engagement, obviously it massively required her to say “yes”.  Importantly if we did live together, like many people who get engaged, it would be great, that was something we’d both agreed. But was entirely impractical at the moment, I’m a nomad flitting between my brother’s flat, seeing Georgie (in Leicester, Northampton, London and Kent) and being at my family home in Bristol. But nonetheless I had the ring, and luck favours the brave. All I know is I knew I am totally in love with her, and want to spend the rest of my life with her. She was a seriously great girl with a golden heart and a loads of love to give me. I guess you can see I was having a couple of doubts, as it did risk rocking the boat. However I had shown her my mock wedding plans (to make it clear there are no plans nor are we planning, this was just a sentiment) a couple of months ago, she was surprised the fact I’d done it,  so was I, but she loved it. From the start of our relationship I’ve been writing all the great things we’ve done together, I find it therapeutic and takes my mind off of things and of course Georgie really enjoys reading It. The wedding plans I showed her were Normanton Church which we’d cycled past on Rutland water on what has been many of our perfect bike rides. Be this tandeming around Brixworth County park lake, her mum was seemingly impressed how I dealt with her bemoaning how I wasn’t helping, obviously I was, or the countless Boris Bike rides, the last time around Battersea Park at night. Normanton Church is just on the shore of Rutland Water, as the church had just survived the man made flood as they closed the reservoir in the 1970’s. It is small and personal, and it helped that there was a wedding going on that day, which we sat watching and commenting on most of the guests. Perfect location. So, I digress as always, the plan was to ask her just before Christmas, having got the blessing of her Dad first, was to hand her my phone at some pretty location sat on a bench, and just say I forgot to show this video I made. The video I’ve made is a collection of pictures of us, interspersed with clips from a video Georgie filmed of me talking. She asked me questions like “what would you tell yourself ten years ago” I said I’d reassure my geeky self to say that I’d meet this amazing girl Georgie Latcham. The video ends with me answering the question “what would you ask me?” I reply “I think I know what I want to ask?”, that point I was to get on one knee, pop the question, get a yes. Simple. By going through the photos I was reminded by the fact that I only bought new clothes after we started dating, I’d given up beforehand and thought well if I’m going to die what was the point, she inspired me to get out and live again.

I kept checking the Amazon app. I didn’t know what was taking so long really, but it was due to arrive in plenty of time before Christmas. The more I flicked onto the photos of it the more I was happy with the choice, like I’ve said I was fairly certain it was close to Georgie’s description of her perfect ring. The more I looked at it the more I realised why it was better with diamonds on the edge.

The first weekend of December, was the first weekend actually I’d spent with Georgie, where I didn’t have any treatment of any kind in my system. The weekend was very relaxed and we had a great time, on Saturday evening I said as much, Georgie then reminding me that we hadn’t really done anything! I guess that’s the point we didn’t have to. We discussed Christmas presents and I said she’ll leap on me when she finally finds out what her main present is, I probed a little at a bit to check that she still saw a future with me. I really didn’t want to get a no, and she said she did. All systems go. Even a subtle time to ask her Dad was formulating.

There it was on my Amazon, “out for delivery”, no turning back! The ring had symbolically taken quite a journey to get to this point, from Israel no less, I guess like our relationship had, well actually it had been quite easy we were mad for each other at the start, but obviously it was fraught with cancer related difficulties. Like going to appointments, fear that I would die quite often, combined with cheering when things were going well. We had a perfect moment in clinic when I was told actually the pain I was getting in the liver was nothing and I’d in fact had more shrinkage. Georgie started playing “Three Little Birds” by Bob Marley, right then after the staff left, and we did the Wolf Of Wall Street Chest bump. We felt invincible that day.

Things didn’t work out quite how they intended to. Instead they worked better. The weekend before Christmas, Georgie and I went to her parents for our Christmas Day, along with her brother and her sister in law. In the evening whilst the rest of the family were busying themselves with a puzzle I went to get a drink knowing her Dad was in the kitchen. I stuttered a bit but eventually it came out “I’d like to get engaged to your daughter” then we had a long chat, about life, my reasons for wanting to do it, and how much they like me and read the blog. How I made her happier than he has ever seen her with anyone else. He was very positive and delighted how happy I’ve made his daughter. But  quite rightly he needed to speak to his Georgie’s mum first. They were thrilled by the news, and said yes, we very much had their blessing.

The day after I had my first dose of radiotherapy, and somehow became very feverish afterwards and that was when I was admitted to UCLH. I was just on the bed in resus thinking I really wish I’d done it.

As I was calling Georgie I was being whisked back from chest X-Ray, giving my Dad the phone to finish the call. All I managed to say was “tachy, temperature 40”

Diagnosis until found not otherwise, neutropenic sepsis, please see other blog about this.

I was then due to be going to the Marsden for more Pembrolizumab. This obviously turned into the episode of the previously blog. Need we reminding.

But somehow by the evening of Saturday the 2nd Georgie and I were watching TV in bed together, feeling mostly like a normal couple, as could be. Georgie was still upset about what had happened (two days before – when I lost the ability to talk), we all were. Georgie and I went off on a walk. Ring planted in my pocket. Right there on the steps of the Royal Marsden Fulham I asked her to marry me, after telling her how special she was to me how we adore each other and most of all just how much we love each other. She said “Yes” but was crying too much and it felt very overwhelming for me to be out of the hospital for just  a short time, so we went for a  walk and calmed down. We discussed tons of our relationship on the way around. Feeling buoyed she was ready, the photo one, and the one we’re calling the actual engagement. However on our walk back to the main steps of the Marsden there was a hitch, someone was smoking outside. So we walked around the block again only to find an uber waiting then I got my chance, repeating mostly what said last time, at last she took the ring.

My Facebook status

‘So well! Georgie and I got engaged this evening. After a nice short walk around Chelsea where we reminisced about how we’d done so many great things together, I proposed on the steps of the Royal Marsden. This was my first wander out of the hospital since admission.

I told her how much she means to me, I told her I needed her, I told her how much I love her, I told her how much she makes me happy. She’s quite simply amazing, she didn’t need to get involved in my crazy life but she did. For her it was always simple she fell in love with me from the second we met and I fell in love with her at the same time.

Obviously we have significant other priorities so there is no talk of a wedding. This is to show my love for her and to hoping that I can repeat my miracle of meeting Georgie by beating this awful cancer.’

Mum and Dad were surprisingly up by my bed when we got back, so we had a cheers in the day room, water of course. They were both beaming and very pleased. They weren’t surprised as I’d shown Mum the ring before Christmas.

After my parents left Georgie and I led on bed together, which is obviously an infection control “no-no” but a just engaged couple “yes-yes”. But was kind of politely and slightly sternly asked to leave at 10.30, which meant we had to continue complimenting each other over What’s App, and announcing the news on Facebook. It was quite a bizarre way to spend your first evening engaged.

The next day Georgie had a couple of friends coming to see us already (now obviously friends with me too!) plus my friend Nick was coming too. We asked our parents and I asked Dave, Paul and Alice too. For an impromptu celebration in the Burdett Coutts Day room. We asked for Schloer more than anything else, but alcohol came along too. A good mixture of savoury food from Georgie’s Mum, sweet things from everyone else, and a very nice Hummingbird Bakery cake with congratulations from my Mum. I even said I didn’t know if an engagement cake was a thing, but then again nothing about this engagement was normal or turned out to plan.

We had a few choice words at the end starting with me… Plus my Dad, her Dad and Georgie herself. My Dad actually summarised what I said in one beautifully honest sentence “you’re the best thing that’s ever happened to him”.

Georgie had to get back to uni that day, and the whole thing finished about 4pm, in some ways I really don’t think the day could’ve been better and the engagement couldn’t have been more perfect, and that’s encapsulated by my Mum’s poem. We all left smiling.

The poem at the top is written by my Mum who’s a keen poet who writes, publishes books and wins prizes. http://www.poetryspace.co.uk

#TopDoc2015

Thanks to my old GP supervisor who used to take me out for a lot of Nando’s as the practice was just above. He the keenest Twitterer I know and saw that the prize was going ahead. Personally I only use it when I publish a new blog. I took to Facebook, and spread the word. It was amazing how many people, said they either had to sign up or have an account and never use it, because they don’t understand it. But they got past those barriers and I won with 120 votes. The two other commendations went to @Liz_Riordan, @docjohnhinds “@johannmalawana. In order, a fellow blogger check out her blog A Breast Surgeon with Breast Cancer (http://www.Liz.oriordan.co.uk). John Hinds, a 35 year old Anaesthetist and popular lecturer in trauma science, was sadly killed in an accident whilst providing medical cover during a motorcycle meet. He wasn’t driving he was on the side of the road. Johann is the BMA’s Junior Doctor representative and has been heavily involved in the negotiations and the industrial action. Thanks everyone for voting for me, it’s such brilliant recognition, I’m getting my picture published in the 16th Jan issue of BMA news. Plus it got a few more donations and we’re over the all important £55000.

Hairless

I was feeling very lucky to have avoided hair loss from the radiotherapy and most importantly managed the engagement with my hair still intact . It was almost like it was waiting. However two days later it was very easily coming out. As I was being discharged that day, I went straight to a barber, for a trim, well a continued annihilation of my hair and to smarten up the beard. Dave told me afterwards he was thinking about taking a photo but saw my face and thought better of it. He was right. Having written a whole blog about curly hair it’s clear that I like mine a lot. For one it covered the scar, and two I’ve got good hair.

So I sat there glum thinking through all the unfairness of it all. I’ve got used to it since with glasses and a beard it’s not too bad.

K+

I was actually back at the Marsden the day after discharge, but this time the Sutton one, my potassium had come back at 2.9 (low) and I needed to get it checked again. On arrival got some SandoK (horrific potassium replacement – tastes like seawater) and had my bloods taken and left. Only for my brother Matt’s car not to start. After some guys helped us jump start it, it stuttered and stalled. Fortunately the second time around with me pushing, it leased to life without me pushing albeit stuttering a lot so Matt drove off to run the engine. I ran up the hill after him, it was a big mistake, I got about ten metres before I was completely shattered. I breathlessly walked up the hill until he came back. The steroids have already made my leg muscles weak. The potassium came back at 3.9mmol so I didn’t take any more SandoK.

On Friday 8th

I was back in for them to see my progress, outside the waiting room after getting chatting about the apparent recent loss of hair. Another patient asked me what stage of treatment I was at. I explained that I had almost died last week, which put a dampener on the conversation, but then I went on to explain my story to her and about raising the cash. I then asked her about her cancer, she said that she’d had advanced melanoma I pressed her for a stage just in case she didn’t mean stage four. She said that “she’d never been told” I didn’t press her for all her tumour sites but I got the impression she was riddled below the neck. This is because she nonchalantly explained twoyears pretty much to the day, that she’d was given a choice between a new therapy Pembrolizumab or to try the chemotherapy. She didn’t know what to chose but went for the Pembro, I got the impression or her memories are waned, but this wasn’t an easy choice as she had the impression the chemo worked, in melanoma it doesn’t do anything and is now off the guidelines. She was coming to clinic today to consider stopping the Pembro, as she’s had complete regression of all her tumours with no side effects. Wow. She didn’t seem to realise how lucky she was. She was a lovely lady, although her husband didn’t say much, and they have an autistic son at home, and because of Pembro, she can stay looking after her son. I just really truly wish this was not in my head.

This is a remarkable story and she doesn’t know why. It was great for me to see and hear her story and her ignorance, as it was charming in a way, because that’s the way it should be, that’s the oncologist’s dream.

Of Brain

I’m going to do what’s probably quite unusual and actually type out the scan report. This is verbatim with my explanatory comments in square brackets. This is to highlight how far I need to get but also how far I’ve come, plus I feel it’s actually a very good report, as it doesn’t contain much jargon and is easy to understand. 
CT Head Thorax Abdo Pelvis with Contrast
Clinical information:

Metastatic melanoma. Multiple brain mets. ? Improvement of cerebral oedema [inflammation surrounding the tumours in the brain]. Re-staging CT TAP. [A CT from the neck down]
Findings:

Comparison was made with previous CT brain dated 30/12/2015 and CT TAP dated the 24/11/2015
Multiple widely scattered intracranial [brain] metastases [cancer which has spread] again noted with no difference in number, size and distribution. The oedema [swelling] around most of the lesions remains stable with no definite evidence of improvement on imaging. Brain appearances completely stable.

 
In the lungs there are stable bronchiectatic [abnormal widening of the airways which increased the risk of infection – presumably because the tumour stretched the airways then it shrank] changes at the right lower lobe and the solid nodule distal to those has decreased in size measuring 1cm in the current study from 1.5cm previously. No new lesions seen. Pleural spaces are clear. No abnormal thoracic [chest] lymphadenopathy [it’s talking about swollen lymph nodes which are typical place for cancer to spread to first]
Below the diaphragm [in the abdomen] disease in the liver is stable. Marker lesion in segment VIII [jargon – for somewhere] measures 3cm as before and the largest lesion in segment VI measures 3.6cm previously 3.7cm. Smaller lesions appear stable as well. No new liver lesions. No intra or extra pattern dilatation. 

Disease in the spleen appears less pronounced with marker lesion in the posterior [back of the] spleen measuring 1.6cm previously and 2cm and another lesion that was previously seen in the spleen anterior lay not visible in the current study. 

The pancreas adrenals and both kidneys appear normal. Small and large bowel are grossly normal in this non-dedicated study. No evidence of peritoneal disease [the membrane that covers the abdomen]. No evidence of abnormal retroperitoneal [space at the back of the abdomen] or pelvic lymphadenopathy.

This is where we are at. 
The reason the blog is called “Of Brain” is I do not want people jumping the gun and thinking everything is going to be ok. The brain is still the concern. I am still very much unwell. I’m at my brother’s house, tired, worn out and having intermittent headaches, wondering when or if I’ll need to be admitted into hospital again. The cancer in the head almost killed me and as of last Wednesday they were considering withdrawing active treatment from me and just giving me palliative care, that is how bad it was. With my family, Alice, Georgie (my fiancée!), Matt and Rachel, left that night wondering if I would be able to speak again and if I’d survive the next few days. However I was given high dose steroids to reduce the oedema (eluded to on the report). The steroids worked clinically and by the end of the next day I was back to where I was 3 weeks before. Listening to all their stories, they as frightened as I was, I just couldn’t verbalise it at the time, fortunately I was so drowsy I don’t remember much of the day. What I’d inadvertently done is one rapidly got worse, as I’m young, but perhaps missed the warning signs that things were getting that way, like vomiting and sleepiness. As I was told that this could be due to the radiotherapy I was having and I was eager to keep the steroids low as requested. 
After 5 days of high dose steroids, the enigma is why am I so much better than the scan. My Cancer Nurse Specialist called me Lazarus, fittingly as I rose from the dead, as she reads the blog she actually got the update on New Years day at home. As you’ve read, you can see the head part of the report actually shows no change from the last scan (that day), at least there wasn’t an increase in the oedema or tumours, but no change. This is confusing as you’d expect a change. When it came to this I said to the Prof “I’m a complicated patient” of which he replied “you’re not the worst SHO (Dr) I’ve ever had”. It is a major cause for concern as the oedema (inflammation) could easily bounce back as I begin to wean the steroids down. We don’t know how much of the oedema is related to the radiotherapy or why it is so resistant. Things do not always correlate clinically (as in my symptoms) with the radiological findings (i.e. the CT), but of course, I prefer the way it is, but reassuringly I’d like both.

 
Hence then the tentative reasons to be optimistic, that I eluded to on Facebook. The Prof, when I saw him Monday afternoon, gladly announced that I’d had shrinkage in the lung and spleen. Also the disease is stable in the liver, both of which I was hopeful for but did not want to jinx anything by saying it too loud. The reason for being hopeful was firstly I’d not had any liver capsular pain and that was one of the lesions growing fastest post Dabrafamiracle. Apart from when the registrar in UCLH prodded me a bit too fiercely and once at Georgie’s. So I didn’t think it was gone, but I was under the impression that it had at least stopped because it hadn’t become constant. Then there is the lung, which I was more confident about, as I’d had a chest X-Ray the week before which I’d seen and felt “there’s not really a tumour there”, but as the CT is more sensitive there is, but it’s now 1cm, from 1.5cm post Dabrafenib. 

 
I requested the CT below my neck, I think they would have done one anyway, but I took the risk, I had enough evidence to suggest that it would be an optimistic result, that by having room to be optimistic and my obvious clinical improvement, that it hope it means it would be very hard for them not to give me the next dose of Pembrolizumab. To put it simply doing the CT of my body was very helpful as it shows one very important thing, I responded to one dose of Pembrolizumab at least from the neck down and that’s despite taking steroids for most of the first dose, but not all.  
This means we need to plough on with the Pembro, but I need to try and get the steroids down very slowly first, as we’re very worried, especially me, becoming critically unwell again. The other issue is pseudoprogression. This is when the T-Cells have been switched on again by the Pembro and infiltrated the tumours in order to kill them, but this can cause a huge swelling and can be awful for the patient particularly if in a closed and vital organ like the brain. 

Of Voice

I have to recap but I think I’ll miss stuff. Here is a Facebook status that I made when I was feverish and admitted to UCLH on the 21st December.

    ‘So I was admitted to UCLH yesterday. I received radiotherapy at 1500, and felt fine. Coming off the tube afterwards the wind hit me and I couldn’t stop shaking (rigors), went to the GP as I already had an appointment and it was close. Contacted my team while in the waiting room, no answer, saw GP who was very good actually. I was feverish, with a high heart rate, and she suggested A&E, the problem I had was the knowledge logistically it would be simpler if I had gone to the Marsden. I phoned the team and they strongly suggested A&E, particularly as potentially I had Neutropenic Sepsis. This is when you’re immune system is so suppressed that you have almost no white blood cells (the ones that fight infection) in your system, a very severe emergency. 

Dad and I then walked to A&E UCLH because a taxi driver refused to take me. In A&E I made a huge fuss, demanded to be seen immediately, and to be fair they were very quick. Thirty minutes later I was fully monitored on resus with IV antibiotics and IV paracetamol flowing into my system, and my temperature falling from it’s peak at 39.5C down to normal. Due to the fright in my voice and Dad’s voices Georgie, Dave, Matt, Mum and Auntie Marilyn all came very promptly indeed. As things were readily appearing less serious, Paul stepped out of this one, having to be in Newport today.

We are not entirely sure what’s happened. The normal places to be harbouring an infection, were negative, my WCC (white cell count) was 19, very high but could be as result of the steroids. CRP (a marker of infection in the body) was low.’
I was accepted at the Marsden, the next day and continued radiotherapy for everyday that week. I was discharged after two days. 
That’s the recap. 

Before I went to bed on the 29th of December I could have guessed something was wrong, because I got mum to type while I dictated the blog about Christmas.

Here’s the blog

‘I don’t really feel like doing anything. Radiotherapy has taken its toll. I had my last session today and was given the mask to take away. Fortunately I had the chance to take part in a trial comparing closed to open masks and got randomly allocated to the open one which was marginally better. I could not open my mouth and was pinned down but at least I could see. Other than that it has been a whirlwind of pain and discomfort and I am sleeping a lot. 

Despite it all I did manage to have a good Christmas with my family. We are not a religious family but we tend to take Christmas seriously and there was lots of lovely food made by Mum and Auntie Marilyn. We had a lot of board games between us and enjoyed our usual rivalry. My favourite present of all was the book Georgie created for me from photographs and she added quotes. It made me feel very special to feel so loved. Further to this Mum and Dad got me an aromatherapy kit and Georgie’s brother and sister in law bought me an aromatherapy massage session. Although I think there’s little health benefits in these therapies, they help me relax which is just as important. There was definitely a Catan theme this year with Paul getting me an expansion pack for the main game and Matt presenting me with a very nerdy t-shirt. Catan is my favourite board game by the way. Dave did his bit to keep me warm with a jumper.’

Imagine a world where you can’t communicate but you can hear. 

That was my reality on the 30th December.

I woke up that morning disorientated and getting worse. I tried to eat some porridge which made me really sick. I’d been sick twice in the last week, it was very frustrating as I seemed to be nauseous for only a second before I was sick, so no warning. Basically things are getting worse, although we (including the doctors here) aren’t quite sure what happened when I was admitted to UCLH it would seem a virus is likely as nothing grew back, as viruses don’t replicate like that.

Of the many weird things happening to me, I also seemed to have a right sided hemispatial neglect, which is yet another line I didn’t ever want to say about myself. A hemispatial neglect is a deficiency to awareness on one side is observed. It’s interesting as a Doctor, and awful if you’re a patient, I almost walked into my Mum. What’s weird is you can see kind of, but you’re not aware of anything specifically in that eye. If you wave both hands at the person then they can see both, if you just wave the affected side, the patient won’t see. Mum was to my right when I just got up and walked straight into her, for her then to slide her chair back, it was rude but I wasn’t aware of her being there. 

The list of neurological symptoms is quite endless. I was very drowsy, but could comprehend what others were saying (so I still had Wernicke’s area) but all I could seem to say correctly was yes and no. This was incredibly frustrating and very scary for us all. I tried to write but I neither could hold my fist to hold the pen nor probably be able to read my faint scribble. Georgie, again being a very helpful Speech and Language Therapist brought in communication tools for me to use. Even that wasn’t that easy. She quickly found out that I could understand everything but that when I went to speak nothing sensible came out. All I wanted at one point was oramorph (my head was in excruciating pain) and that was only realised after Georgie did an alphabet on a piece of paper and I pointed to the letter O. Another difficult one was to ask for a bottle to wee in, especially when you’re in no position to play charades. Eventually Georgie said toilet, so I waved my arm more, bottle? Yes!and she quickly ran off to find a bottle. I had a weak and insensitive right arm for quite a while. I remember waking up with my arm way over the side of the bed rails. I had a CT head to see where we’re at, it’s bad, loads of oedema but presumably the steroids have worked for now as I can now talk. 

The plan is now to give time for the steroids to reduce the oedema, but find out more on Monday with another scan. Then fingers crossed then can have Pembrolizumab again, but I need to reduce the amount of steroids I’m taking. 

Quite obviously caused quite a bit of worry. Understatement. It didn’t help that I’d forgotten my phone password and therefore no obvious way for me to contact Georgie. But by then I couldn’t do anything. Alice got hold of Georgie and by about early afternoon everyone was there, apart from Matt who’s trying to fly back from Australia. Matt and Rachel came too in the evening which was a nice support for my family. Everyone was desperately hoping for some sort of improvement. This, luckily, happened rapidly as by the next day there was a dramatic improvement in my speech and my headache was a bit more controlled. I had to relearn how to use my phone. It was very weird and I felt like my Grandad, who used to turn his phone on once a year just to keep his credit and then put it straight back in the box. 

I’m now not for Resus, something I didn’t particularly want but I know it makes sense. Although I don’t feel like seeing the article, I know one exists where they tried to give CPR (cardiopulmonary resuscitation) to 500 or so people with metastatic cancer (cancer that has spread to different organs) and well, none survived.   

My chances are clearly running out, but I have shown bouncebackability, the term coined by Ian Holloway of course. For now I’m remaining in hospital, I’ll try to keep you all updated. Sorry if I haven’t replied to people’s messages, I really appreciate them, but I have been a bit preoccupied and a massive side effect of whole brain radiotherapy is needing to sleep, a lot.

The Endless Setback

I’ve written a nice little blog about receiving immunotherapy, but it didn’t work out. I did receive Pembrolizumab the better of the two immunotherapies on offer to me, it almost felt like it was written, NICE had seemingly brought forward their meeting for the “Technological Appraisal” of Pembro in patients who’d yet to receive Ipi. Therefore I was eligible not only to have it, but also for free, first line from the 25th of November. The benefits of it is that it works faster with less side effects and in more people. However like Ipi, as their action is indirect against the melanoma there is still a lag time for full effectiveness, if you get an effect at all. This is because they treat the immune system (Cytotoxic T cells), and they latch onto both the T cells and the melanoma to remove the inhibition that the cancer has evolved against the immune system. In effect the idea is to treat the patient and not just the cancer. Dabrafenib just treated the cancer, and in me did this rather well, albeit not perfectly or I’d still be taking it. It was turning out to be very hopeful with a former US president (Jimmy Carter) announced that his melanoma secondaries in his brain had seemingly vanished after a course of Pembro.
This gap between treatment is what I was always frightened of. However, initially I took this setback better than finding out I had brain secondaries, because at least I was expecting to become BRAF inhibitor insensitive at some point. However as much as I was reassured the brain secondaries weren’t as bad news as I thought they were I really felt that they would massively increase my risk of death. It is annoying that my fears were right. I received Pembro on Monday, there was some delays at actually getting the treatment, due to pharmacy, the bane of any junior doctors life. But by 6pm the infusion was up and I was receiving it. I was kind of expecting to feel different straight away, like I did when I started Dabrafenib. But clearly the effect was not as quick. I mentioned to the team that morning I had been getting headaches since Thursday, and night sweats. Night sweats are a symptom of cancer and recurrent ones should not be ignored. So understandably I was very eager to start. By Wednesday I woke up with my headache so fierce that I could not even be bothered to get pain relief. I rang the Marsden and spent most of the day in the clinical assessment unit, fearing that I would not be able to go to Wicked in the evening. Georgie raceddown from Leicester earlier than planned and by 2pm they’d decided that an urgent MRI scan would likely not show anything and discussed my case with the radiologist who also agreed. I had mentioned a drop in sensation in my inner thigh on clinical examination but perhaps this was old. The scan only 10 days before showed small stable disease…

I was pleased as it meant I could go to see Wicked, with Georgie, some of her friends, her parents, Dave, Alice and Matt. It was well, Wicked, it’s a very good show, probably my second favourite musical that I’ve seen after “The Book of Mormon”. The story is good and the songs too, they’ve managed to make a very good subplot to the wizard of Oz, so much so you’re left with a bad taste about the Wizard and everyone else in the book, as opposed to the Green Witch.

I digress, by Thursday the headache was still very much there. I really didn’t think it was going to abate like all the clinicians and family looking after me had hoped. More water was suggested and to overhydrate. I’d been proactively offered an appointment on Thursday by my Cancer Nurse Specialist to see my regular doctor on Friday. In the morning I emailed her basically demanding an MRI scan, I think rather pointlessly as they’d come to the same conclusion. By then I had numbness in my left ring finger, initially I thought this was from resting my funny bone on a table for too long, but as the symptoms did not abate my conclusion was something destructive is going on in my head. The headache was relentless, only marginally improved by codeine that they’d given me two days before. I was cannulated and they’d call me when they could fit me into the MRI scanner. They had one scanner offline that day so they weren’t overly pleased about another patient. But they squeezed me in nonetheless. We went to Winter Wonderland in Hyde Park whilst waiting for the MRI scan, we grabbed lunch and soon received the phone call for the scan. We jumped into a taxi and arrived slightly late, the first time in my long outpatient career that they were waiting for me as opposed to the other way around. Straight on the scanner. By then my head was burning, the fairy lights in Winter Wonderland had seemingly stimulated a migraine on top of my already burning mind, and my aura (scintillating scotoma) was in full flow. So I couldn’t see clearly, I didn’t tell Georgie I needed her to not panic so we could get back in time. After the scan I was clearly very unwell. Georgie and I were trying to have a conversation in the cafe, and my eyes were half closed and I was sweating a lot. Ibuprofen helped to clear the migraine, but the headache remained relentless. My Cancer Specialist Nurse called, and it was pretty obvious something was wrong. She’d arranged with the Prof to see me in his Private outpatients clinic. The chairs were nicer and there were free mince pies, otherwise it was still pretty busy. It was slightly chaotic as they were waiting for the scan report I guess so that they had the full information, but clearly they’d made the plan from seeing the images themselves. I needed steroids and quickly. There were new lesions and some of the lesions, one in particular had almost tripled in size, the rest were hard to ascertain from all the oedema (inflammation) in my head. This is why I couldn’t feel my finger, and why my head felt like it was exploding. I’ve been having flashbacks since then about things said, mostly things I said.

“my time on this planet is probably drawing to a close”

“my disease is so aggressive”

“let’s not beat around the bush this is very bad news”

“I really don’t have long do I”

Some things the Prof said:

He gave me his number

“You need steroids, you can’t possibly walk around like that”

“Let’s not give up just yet” or something like that.

The problem with steroids is there’s a risk that you reduce the efficacy of the immunotherapy, as steroids suppress the immune system. However many people have been successfully treated with immunotherapy having had steroids (I am on a very high dose of steroids), but it’s a catch 22. Either I have no quality of life at all, and try to weather the storm, but likely to have more neurological damage in the process, or take the steroids.

I had plans and they were ruined, I couldn’t risk going to the wedding Georgie and I were invited to the next day, because I couldn’t predict what the headache would be like. Actually I could have probably managed it in hindsight. I was told, and it’s something I knew already, that I wouldn’t be able to sleep that night because of the steroids. Steroids mess with your daily hormone balance, to the extent it tricks your body into thinking it’s just woken up. In fact I slept better that night than I have all year. Georgie and I watched a programme in bed and fell asleep at 8.30, I woke up occasionally but mostly slept for 12 hours. Although this isn’t medical at all but my brain had taken such a battering, with the steroids it had a chance to relax and I could catch up on the disrupted headache sleep from the last nine days or so.

The strangeness of my life, is all too apparent and there’s an odd twist to this, Georgie and I ordered an Uber to get me to the Marsden as quickly as possible on Friday morning. We were picked up and the driver informed us of new regulations that he now in fact had to wait five minutes before he could take us where we needed to go. I had heard about these proposed plans, and was kind of annoyed, but needs must, and I said just as much, being sympathetic to his plight. After all, we felt, it must be more annoying for the driver, he entertained us with “hold music” and gave us answers from an email every time I suggested we got going. I was eager to get there. At five minutes, he said look at the cameras, they became more obvious. We’d been part of an elaborate prank and we were filmed for a Uber video they hope to go viral in protest at this silly regulation. I just felt bemused, Georgie was overwhelmed, just another weird turn in my crazy life. There were cameramen as we got out the car and before we knew what was happening we’d signed so we could let them use the footage, we both felt we came across rather well not getting unduly annoyed and played along. We were whisked off to the Marsden in a free trip in an UberLux (the higher ranked car).

Further to these strange goings on my friend Matt was the life saving doctor in the attack in Leytonstone tube station, he very kindly asked each of the news agencies that contacted him for donations to my justgiving page. The night that it happened he messaged me and the boys Whatsapp Group, I’m covered in blood and I’ve just been involved in this, passing on the link.

http://www.dailymail.co.uk/news/article-3349714/Junior-doctor-tells-saved-life-Leytonstone-tube-stabbing-victim.html

Chosen specifically because of the hard man picture. Matt’s Mum reaction to it summed up how I felt, she saw him two days after on his birthday, and kissed him for being so brave and slapped him for being so foolhardy. As proud as I am of my very good friend, I’m very relieved he avoided any harm that night.

I’ve gone off on a tangent, into my bizarre world. I tell you all, I’m sorry. I’m sorry, I have an aggressive form of one of the most aggressive cancers. My life would be so brilliant if it wasn’t for this devastating disease. I have a good profession, a great family, super friends and a beautiful amazing girlfriend. My disease is so aggressive it seemed to surprise my clinical team, who including both consultants and all the registrars, probably have over 100 years of experience. I did not stand a chance of catching my disease early. I really feel that I only had stage 4 for a matter of a couple of months and by the time I started getting symptoms late January I’m pretty sure it was in my brain, liver, lung, spleen and gallbladder at that point. Stopping the Dabrafenib has taken it off the brakes and my cancer is in full throttle. My only saving grace is it took so long to come back in the first place. I still have a chance, if only the Pembro is less affected by the steroids, and it works quickly. Otherwise I’ll lose my fight before it even gets going. Where do we go from here? it would seem the next option will be to irradiate my brain to try and limit the growth of the melanoma therefore giving me a chance for the Pembro to work (if I am one of people who does actually respond to Pembro).

One Strike Down

As always I’ll give you the news straight away. It’s bad news. The Dabrafamirable is over and Dabrafenib has stopped working in my Liver and spleen, as my CT on Wednesday showed a little bit of growth. Fortunately the brain lesions are playing fair and are stable. But it’s crap. I’m one strike down. But we have to praise Dabrafenib, it did it’s job and in me it did it’s job better than most. The tumours shrank to a level where they are not causing me any symptoms and this is from a level where they would have very quickly killed me. Due to it’s fast acting nature it is the only drug that would have saved my life. So thank you Dabrafenib, but your days are numbered. It had seemed to be going so well, Dabrafenib was just beating the big C back holding it at bay. Actually I was getting used to it, the Melanoma was happy and so was I. Instead the Melanoma has got greedy and wants to carry on it’s pursuit, which if left unchecked will kill us both. You die with me melanoma, I just wish there was a way of telling it that.

 
The news came at a bad time too. I had the CT a little early due to a clerical error. But as I had found a small lump just below my belly button I was eager for the date not to be changed. That was biopsied the week before and we are still awaiting the results from that, but it is likely it is a subcutaneous (just below the skin) lesion of melanoma, given that we now know the melanoma is active once more. As always despite the melanoma happily ticking away, I remained asymptomatic. I heard the news while I was in Georgie’s car driving up to the British Association of Skin Cancer Nurse Specialists Annual Conference in Birmingham, where I was due to be the pre-dinner speaker. I was pretty much the first speaker at the whole conference. They’d been very accomodating and they’d given me two rooms one for Mum and one for Georgie and I. It was at the Hilton and it was going to be a very pleasant evening indeed plus a good chance to wander around the conference the next day and hear about progress in melanoma.

 
I wouldn’t usually call for CT results, but I was waiting for the biopsy result too, and my Nurse, said she would ring. Being impatient and feeling anxious about it I rang in the car. She got to the point quickly “it’s not good I’m afraid” then told me. I was stunned, Georgie cried whilst managing the car racing down the motorway. I called Dave and he somehow knew from the timing when I rung that it was bad. Then phoned Mum, who also guessed because I’d just text her to say we were twenty minutes away from her at the conference.

 
As I turned up Rowena and Huw from “Before I Kick The Bucket” were there, the way I’ve written this sounds like it was a large coincidence, but of course it wasn’t. We’d arranged to film the speech plus a little interview with Rowena as a follow up from the first show. It’s so annoying because I desperately wanted to show them and the viewers how well I was doing… because I was. Row’s has had some significant setbacks with her own treatment, but is somehow is blindly carrying on. It was therapeutic seeing her as she stays positive despite everything. Although I was interviewed before, we had to pretend that it was just after the talk.

 
The talk itself was daunting, I had been very anxious that morning about both the talk and the results. I was determined to make one of these good. People have asked me how I can get up and talk so candidly about such a personally emotive subject. The answer is I don’t really know, it’s partly just because my life is so surreal when I’m up there “performing” it feels like someone else is saying it and doing it. Then the reason I managed to get on the stage in the first place is the blind determination I have to tell my story. As cancer patients we need to scream and shout about it, because as I’ve said countless times, we need support. On my table a gentleman who ran one of the largest melanoma charities, made another point too “it’s amazing that we spend so much time and money funding projects to cure cancer in the UK, but when the drugs come out we’re so slow and resistant to actually funding them”. His point is if we were never going to fund them why did we bother researching in the first place.

 
My talk is below and I the subject was “Living with Melanoma”. You will realise that some bits were no longer true. I didn’t have the time nor the emotional energy to change them, instead I just cut it as I spoke.
Living with Melanoma.

 
After many months I went back to the hospital, where I was diagnosed with stage four malignant melanoma. This wasn’t particularly deliberate but I was placed there to work as a Doctor in Kingston hospital. The walls which reminded me of the worst day of my life. What a difference a day can make. It was a cruel twist of fate in what has been a rollercoaster year of fighting for my life and meeting the love of my life. There are many days in your life that are unmemorable and unremarkable. Think about all those days where you just washed the car, or took things to the tip, or played with your kids in the park. Those normal days. Those brilliantly normal days. Where you were just content. Melanoma has taken normal days from me, now every day is a miracle or a Dabrafamiracle.

 
It all started in 2003. A Sunny October day. I went with my Mum to Frenchay hospital, where I’d been referred under the two week wait. I had been for a hair cut a week before and something odd happened; the shaver hit a lump on right side of my head, the barber had a quick look himself and said nothing. I was only 15, I had no idea what was going on. Fortunately I was trying to have a good look at the thing in the hallway mirror when my mum came in. Stopping this twisty head fit she had a look herself. I was seen very quickly and the thing was biopsied and diagnosed as a nodular melanoma and it was thick, greater than 5mm. The harsh reality of this was communicated to my family and I; but it took years for me to finally understand what this meant. I had another melanoma at 17 caught very early. Family history was properly documented and then tested. It was confirmed that I and many of my family had a was had a mutated form of the tumour suppressor gene P16. Melanoma had blighted my grandmother, aunt, my father and me, and after I was first diagnosed my brother Paul too.
My point of contact after the primary was Jo Watson my specialist skin Cancer nurse. New lumps kept coming up mostly my right neck. The most worrying side, the lumps were tested with fine needle aspiration. Fortunately always normal. Cancer Nurse Specialists offer such a good point of contact and help maintain the continuity of care. Each time Jo would turn up to my appointments and be there to allay my own and my parents fears.

 
Melanoma changed my decisions in life I applied to medical school not only to help people but for my own self preservation too. I wanted to understand disease. Thankfully I was given a place at Leicester and I started in 2007.

 
Another day changed by melanoma. My first day at medical school was different to most, while everyone else stood in the queue to see an occupational health nurse, I was rushed to the front, to see a doctor. We chatted for ten minutes. I actually wanted to be in the queue, people seemed to be getting to know one another and I was missing out. About 3 months into medical school, another day was changed. While fact after fact was speedily verbalised to us and quickly forgotten, only to be relearnt before the exams. A fact waiting for me was in a Tissues of the Body lecture. Skin. Cancers of the skin. My concentration heightened by the word melanoma. My enemy before me. Breslow thickness. Hmm 5mm the worst thickness. 45% five year mortality. Wow. It had been four years by then almost to the day. I felt sick, all these facts about disease that we were told, just floating over us. You forget each disease is someone else’s personal story. It’s lost in all that fact. Each persons lives are changed by their diseases. You forget; there’s only one thing you need. Good health.

My care was transferred up to Leicester under Dr. Osbourne, as time went on I hit the five year mark. I remember just drinking a shot of whiskey to myself in the dark late at night after a medical student event. Cheers Mr Mercer my plastic surgeon, and to Jo my skin cancer nurse. I was winning, and for most of those five years not even knowing it. Melanoma changed my life from the beginning Mum and Dad were very encouraging for me, along with my twin brother to see the world and we went travelling in Europe in our gap year because of that.

At Leicester we had the opportunity to take a year out of medicine and go into research, for an intercalated BSc. My sole reason was to get a publication, I wanted something there left in the ether that will always have my name on it. Choosing my supervisor predominantly on the man himself; friendly, unassuming and passionate about his research. I went one better and secured a first author publication. Sims et al forever there available to google.
At ten years.

That fear lost, the nightmare had been put firmly behind me, the nightmare that is metastatic melanoma. I knew a lot about it, the more I learnt about melanoma the more of a bastard it sounded. If cancer had an Evil King, Melanoma would be it. Resistant to all treatment when it spreads, also cases where the cancer had spread but the primary had seemingly vanished. Furthermore nonpigemented melanoma, where the Wolf has disguised itself, making it notoriously difficult to diagnose.

 
But I thought I’d beat my nightmare. I’d done it I’d become a doctor for self preservation, and had monitored myself a lot. Checking my lymph nodes once a month, follow up every 4-6 months. Multiple other small ops, for potential new primaries, lipomas removed in case they were a lymph node. Multiple ultrasound scans on other lumps and bumps too. I thought my vigilance had paid off. I spoke to my parents about a celebration, they said keep it low key, don’t want to tempt fate. I invited quite a few close mates to London and we joined my works pay day party. I overindulged and cheers the last ten years many times indeed. After all I had survived cancer, even my dermatologist felt that too.

 
Cancer became forgotten I still checked myself whenever I thought about it. I went in November 2014 to see my dermatologist, contacting Ian Gosling, my specialist skin care nurse in London. I urgently wanted them to see them for a new tiny lesion on my right arm. This is how anal I was, despite Dr Lacey being a very experienced dermatologist, it was too small to assess even with a dermatoscope . It was taken off anyway, a benign Spitz Naevus. But I was unaware that was the least of my worries.

 
Another day, pancake day this year. I’d been to the GP a week before about a cough that was getting worse over three weeks, I wanted antibiotics, I’d never had a cough for that long. She declined and said come back in a week. Between then and pancake day I went for a ten mile run. Along with that I had been preparing for my A&E interview to get a job for the next three years. A lot was going on in my life. Pancake day… after chewing through many pancakes I started to get abdominal pain. It kept going by the morning I could barely walk, I went to the GP she called an ambulance, I was admitted to Kingston hospital. Query Cholecystitis. But actually it was Cancer, cancer, cancer and more cancer. It was in four organs, liver, lung, spleen and gallbladder. How did I miss it, all symptoms I put down to other things I was applying for jobs, my personal life was in disarray and I was training for a half marathon. The nonspecific symptoms of weight loss and general malaise could be rationalised. The cough well, likely upper respiratory tract infection, it was winter after all.

 
The news was told to me at 5.30pm but I knew minutes before as Saiskia came into the side room at Alexandra Ward in Kingston Hospital. The text on the badge gave the game away. Skin Cancer Nurse Specialist. The morphine haze readily being challenged, instantly I was almost sober, I’d been refusing more opiates because from the look on the radiologists face, at the ultrasound I was fearing the worse. I wanted to be level headed. My first thought “I’m F…ked.” MY worse nightmare had hit me, despite everything, diligent follow up, becoming a doctor I was caught was my trousers down. I was upset just about the stupid Spitz Naevus. Now I had more cancer in my abdomen than normal viscera, LDH a marker of disease whopping “1234” over ten times normal. Saiskia was there with me for over an hour. From the beginning she gently slipped out the good news,BRAF inhibitors, ipilumamab. Even the smaller detail was good news. “Melanoma notoriously presents like this”, she told me, maybe I wasn’t an incompetent doctor. I had a look at the literature from time to time, but to honest after the ten years I’d got sloppy. Ipilimumab I understood to be effective in some but not many, and the BRAF inhibitors I knew had their lifespan 6-9 months perhaps. Overall it still seemed bleak. what’s this PDL-1’s inhibitors. Now they were a pleasant surprise, perhaps I had a bit of time.

 
On my 27th birthday as well as having a liver biopsy, which later showed I was BRAF positive I was started on the BRAF inhibitor Dabrafenib. From the second I took it, at 10pm that night I felt a bit better. I woke up the next morning, by then in the Royal Marsden hospital, bloods started to improve. LDH was falling. Over the week I started to feel more high as the pain was now over controlled. Being a doctor not only helped me work out the gravity of the situation but actually changed my management too, on the second day of taking Dabrafenib, I consulted the BNF, it advised against omeprazole which I take for heartburn, phew it may have affected its efficacy if I hadn’t been checked.

At day ten as an inpatient I was let home. i stood outside the Marsden it was a real fresh air moment, the last three days I was getting cabin fever as I was no longer “sick”. Surprised I was still alive, what’s more … well.

After 9 weeks off I went back to work. I’d been allocated to psychiatry as the environment was a bit more relaxed compared to A&E where I was due to start. As time went on I remember feeling wow Dabrafenib is just an inconvenience yeah that might sound like an understatement, but at the moment it is just that, with a few oddities thrust on me due to Dabrafenib. The first being curly hair, the second having six hours a day when I can’t eat. It requires the taker to not eat two hours before and an hour after. Having the tablet at 10am and 10pm, has led to many a disrupted meal time and usually missing the desert.While in Psych at the Thursday morning meeting, the team manager was leaving and she’d bought in some Krisby Creme Donuts, I sat there for an hour and a half staring at these succulent items before I was able to have any. I try to be as strict as possible to give myself the best chance of using dabrafenib for as long as possible, hopefully, albeit rarely for years. I won’t even suck a sweet in those six hours. Apart from that Dabrafenib has left me in this weird limbo… I’m seriously ill; but I’m not?
Living with melanoma quite obviously has changed my life, but even the small things too. I recently drove from Leicester to Warwick for an locum shift starting at 8am, I arrived thirty minutes early, and sat in the car park for a bit. I then made my way to the ward, spoke to the orthopaedic secretary, who was surprised to see me.

“I’m here for the 8-4 shift” I said

“I think you’ve come a week early”

Now this would be annoying for most people and it was… but for me I did not want to waste a day. Instead I did plan B. I went to Warwick castle despite wearing a shirt and trousers and looking thoroughly out of place. It was great. Saw the tours and was thoroughly entertained for three hours. The day got better, there it was in my email… Pembrolizumab has been approved by NICE. So what was a bad day, went from a good day by thinking positively to becoming a great day by external forces.

My point is having stage 4 melanoma not only changes the important things in life, it changes everything in your life, your priorities, your outlook, you have to worry only about now, because the future is so uncertain.
You only have one life.

 
There’s pressure too, weird extrinsic pressures put on you. People have an opinion on how I should be living my life, when I would love a good bit of normal. People feel I should be off travelling the globe, or worse just rolling around helpless and giving up. I was asked in Kingston hospital what is in my bucket list, I’d not thought about it, then I shouted “go to Leicester”, simple as that’s where i went to uni , I made other plans too. It takes a degree of mental effort to fight off the negative forces in my mind but mostly I’ve held them back. Cancer is strongly associated with depression. Yeah but being depressed isn’t for everyone. The next thing on my bucket list was also simple, I wanted to see everybody, I had so many family and friends visit me in the Marsden I was given a side room. I also wanted to go to every EU country only needing two go to to. Luxembourg with my parents, and managed a big trip with friends to Malta. Both trips were great and not many people have been to all 28 EU countries before they’re 28. But personally I’ve realised that there’s a great deal of satisfaction enjoying normal. A night in watching The Notebook, with Georgie, my girlfriend. Life doesn’t need to be a “have you done this list”, it should be “are you happy right now?”. My bucket list was simple, so simple I’ve completed it, the last item being a best man for my Twin brother Dave all thanks to Dabrafenib.

 
I was reminded recently that a day can change everything. Everything was going so well, I feel Dabrafenib was tricking all of us into a false sense of security. I had shrinkage everywhere and having seen the scans with Georgie, I’d gone from the images looking abnormal to it actually being quite hard to work out what’s wrong as I’ve had 80-90% shrinkage. But this day was mixed as I’d been to Leicester A&E to get a job there and they were very accommodating to my situation and offered me 20 hours a week. Great, it’s right next to my girlfriends house and I went back and celebrated with Georgie. I rang my parents they were pleased, it all seemed so… brilliantly normal. A nice regular job in the speciality I love, as well as not getting in the way of the fun things in life. Cruelty melanoma hit me then. A phone call, an MRI head I had the day before, booked just to check if I was ok to fly to South Africa for safari, it had found brain metastases. I’d had a CT in Kingston in february and the implication, due to a stable follow up scan, is that they were always there and the MRI was just more sensitive. At least Dabrafenib is working on them but being told you can’t drive and fly, makes you seem all more of a patient.

 
A couple of days afterwards I was feeling very low. Georgie recommend going to see the GP for some antidepressants. She was right I was exceptionally low, I didn’t want to do anything, and I was starting to feel that life wasn’t worth living. I wasn’t sure about antidepressants that much but before that, I’d not felt the true helplessness of depression. Starting sertraline seems to have helped but mostly the support from her and my family plus good results since have helped pull me back on course.

 
I started on A&E three weeks ago, it is very normal and it’s great I can get stuck into work for ten hours. It feels as if I’m really giving something back again. My big bugbear is pain control, it took a long time for me to get morphine when I was in A&E. After checking a patient is stable, my next concern is their pain and prescribe it quickly and check it’s been given. My routine at the moment is two days a week working and spending time with family and friends but mostly trying to have as much quality time with Georgie as I can, including a lovely holiday to Scotland. Every day worrying that we won’t have enough time together.

I started writing a blog early on, it’s something I’d recommend to anyone in my position. It helps keep life a bit more normal, if it’s bad news then everyone can read it and just carry on. If it’s good news then can say well done and not dwell on the subject for too long. Because I’ve found one of life’s most simple questions “how are you?” so seemingly difficult to answer, saying fine is a lie, but I feel if I told them everything that was going into my head it would be far too much and may lower everyone’s mood and mine. It has also attracted a few other melanoma sufferers and their families and it’s great to interact and hear their stories particularly those who’ve used BRAF inhibitors for a long time as well as passing on my medical knowledge to help others.

 
I think it’s quite telling that the single best thing I did was begin fundraising. At literally my lowest point in this whole story, I wrote a justgiving page and poured my heart out. I had just woken up in the Marsden after vomiting all night thinking wow this is it. I told the world what had happened to me and I wanted to raise money to make it not only better for the next generation of cancer patients, but I wanted to honour and praise those people who’d gone into drug trials before me, many of them who would have died, so I could have survived. I’ve now raised £50,000 for cancer research UK. It’s a large chunk of money and will fund at least one PhD which could give us that next therapeutic target against cancer. But raising money has improved my life in lots of ways, people called me “inspirational” I’m not, I was asked to talk at Westminster School and my medical school. The first meant speaking in Westminster Abbey of all places. This led to a year 10 student running a 10km for CRUK raising £1500.

 
Along with that I have been on the radio and TV. The TV programme was called “Before I kick the bucket” and was about how young terminally ill people want to lead their lives. It was great to be apart of it and tested boundaries. Showing actually you can “live with cancer and opposed to dying from it”.

 
The second talk, became the best day of the year so far. The 27th of March. It started badly my friend, who was due to drive me up to Leicester, had overslept and we arrived late. I hurried in spoke to the audience of mostly medical students about how I was and about melanoma. Then me and my clan went to the pub. Then a bar. I was drinking coffee, I rarely drink now. In the bar a lovely young lady came up to me, she told me how much she liked the talk and despite everything Georgie saw through the melanoma and saw me. We’ve now been dating for seven months and she’s the love of my life. There it was the most simple thing on my bucket list “go to Leicester”, led to the greatest outcome, finding love.

Falling in love during the worst year of my life has been emotional. Not only do I have to comprehend that my life will most likely be cut short or the loss my family will feel when I’ve gone. But I’ve got Georgie on board in my rollercoaster life. For her, and people have questioned her, why she got involved, but Georgie’s answer is simple; she fell in love with me. We both know we’ve met Mr and Mrs right and we talk about the future, perhaps it’s wishful thinking, but we both know how great a future together would be. It’s a mixture of building ourselves up to fail, but also a desperate desire to be normal and to have what other young couples have, and that’s each other for eternity. From this experience I’ve learnt that only two things matter to be happy, to find the love of your life and to have a great family. I’ve got both, but we all fear that melanoma will cruelly take it away.

 
I would like to thank you for having me to talk, I would like to take this opportunity to thank all skin cancer nurse specialists for the vital role you have in care for people like me. I like to thank all the staff involved in my care currently at the Royal Marsden. But particularly to Saiskia firstly for inviting me, and on behalf of my family and friends we’d like to thank you for all for being very supportive and for your very speedy referral to the Royal Marsden in my time of need. Thank you.

The next steps

If I had made it to just January the plan would be slightly different and perhaps more preferable as the guidelines were due to change. Therefore I would have received Pembro first + I may have gone into the pembro/t-vec trial, both due to be open in January). However the plan is therefore Ipilumumab, then Pembroluzimab.
Dabrafenib , Ipilumumab and Pembroluzimab

Three strikes and you’re out.
Ipi has a ⅕ chance of working and if it does it typically works well. Pembro works in signifcantly more people somewhere between 33-65%. Both can work on brain metastases. Unfortunately you can’t continue Dabrafenib whilst on Ipi as the combination of the two is severely hepatotoxic (Liver damaging). Ipi is generally still better than regular chemotherapy in terms of side effects, but we will see. Dabrafenib was an oncologists dream. Goodbye Dabrafenib Long live ipi.

As always Paul was first to start sending me more papers, the first being (http://news.sciencemag.org/biology/2015/gut-microbes-give-anticancer-treatmentsboost). Before someone just blindy agrees with an article it’s just worth quickly thinking about the validity of the sources. It quotes two papers which were published in Science, a good journal, and both used mice so not necessarily relevant to me. The first trial they gave mice (who had no gut bacteria at all) either faeces from Ipi treated patients or Bacteroides rich faeces. In both cases the influx of microbes improved the response to ipi. The second trial quoted gave mice lacking Bifobacterium species, a supplement to replace it this promoted antitumour immunity and facilitated anti-PD-L1 efficacy (Pembro). I would recommend reading the article in the link. Georgie and I went hunting for this bacteria in health food shops and found Bifobacterium very easily. Bacteroides was no where in sight, nor is it anywhere on amazon. Then after more googling there’s a very good reason for this, they don’t live outside the gut for more than a few minutes so are unable to put in a supplement, as they are obligate anaeobes, in other words they don’t like oxygen. I wouldn’t recommend this to anyone else, but it shows how desperate I am for a response to the drug as few people do respond. I repeat both trials are in mice and the first trial the mice didn’t even have any bacteria in their gut in the first place. I’m a human and I’ve been habouring my bacteria for 27 years now.

 
Well this is it really, I’ve dealt with it a emotionally a bit better than finding out about the brain mets, mostly because at least I was expecting this setback, nevertheless it’s a disgustingly huge blow and it meant quitting my job too. So I’m now a full time patient.

Of Marriage

It was finally here, the wedding weekend. There was a lot of stress on me on Thursday, I had an MR of my head to see if the brain lesions were in fact stable. It was nerve wracking although we’d try our very best for it not to, we all knew it could ruin the weekend. I was depressed for a week after the previous set back. There was a lot riding on it and fortunately the result was good, well good for me, the disease was stable. We could sit back and enjoy the weekend. I’d sent multiple messages to Georgie but I knew she wasn’t able to look at her phone until half four. However I was doing my best to send her positive thoughts. We had a good chat, with some Wolf of Wall Street chest bumping on the phone. We were winning again. Dabrafenib has bought time. By then I was in the car on the way home. Slightly delayed actually because I managed to leave the Marsden without my Dabrafenib by getting distracted on the phone to Dad. On the way home Georgie was seemingly texting back slowly, “perhaps I’ve done something” I thought. I was really happy but I wanted her to be celebrating with me. Mum was on her phone a lot on the back seat and I was getting a bit bored. I text Georgie asking if she was still planning to go to the fireworks night. Slow response “going soon xxxx” an hour later. Oh ok perhaps we won’t speak again that evening, I was knackered. Got home, took my bag upstairs and there was whispering downstairs. I asked Paul and Mum what they were talking about and the resounding answer was nothing. I went to the car to bring some more things in and glanced up to see a car unusual to the street, an old silver VW polo. I turned towards my Dad’s car, then looked back up towards the silver car. Something angelic was coming toward me. “Wa, wa, Whaat…. is Georgie doing here” raced through my mind. So confused, yet so happy! Completely utterly surprised. I couldn’t stop kissing her, I really wanted to celebrate with her and there she was! She’d been devious asking me earlier for my address in case she needed it the next day. Then liaising with Mum about what time we’d be back. She arrived just a few minutes after us driving from Northampton to Bristol.
I was pumped all evening. It was a perfect moment, ahead of the weekend we and the whole family had been talking about for months. I literally couldn’t be happier.

Friday morning was good, I was interviewed by BBC Bristol. The presenter was a stand in, as the normal presenter was on compassionate leave after his 22 year old daughter sadly died in a car accident. The stand in presenter was lovely, she asked nice open questions and let me say everything I wanted to say. Georgie and Dad who were sat inside the studio both felt it was the best interview yet. 

We went back home then went to help Dave and Alice set their wedding up. Alice had clearly gone to a lot of effort that Dave had not mentioned at all about all the table decorations and everything else. All the small things. She’d done them really well. Georgie completely embraced helping out, to the point where I was thinking she was getting ideas for her own wedding. It was a great chance to be creative and the whole space was converted into a wedding venue in three hours. 

After that we were starving, a real inate hunger. Most people from seeing Georgie’s slender frame would be rightly surprised how much she eats. Helped I guess partly due to being vegetarian. But it’s a diet that largely is consistent on 3 meals a day, with plenty of crisps in between. I rang ahead and Domino’s arrived when we got home. It was a bit of a rush as we were going to Kieran and Lucy’s wedding reception that evening, they’d married in Mexico only two weeks before and this was part of the occasion. It was a fun start to the weekend and it was an added chance to catch up with a lot of my closer friends, which I felt I may not get enough time for the next day. Kieran and Lucy had very generously asked people to donate to my Justgiving page instead of receiving wedding gifts. Georgie looked absolutely stunning in a dress she’d bought for the occasion, she was slightly disappointed as it didn’t cling to her in the right places, but with as subtle use of a safety pin, it was fine apparently. I thought she looked great before and after said adjustment. The line of the dress just hovered around her cleavage. In the car it sprung on me that I had very rarely seen this. Most of her clothes elegantly tucked her breasts away, without the definition being lost underneath. In the car we talked about how her parents were always against this, and Georgie had come to the same conclusion. It would be weird to talk to your parents with your breasts on show, so it should be weird to talk to anyone else too. It was good logic, and I love the way she dresses. 

The next day was the big one. The wedding actually was due to start later than most other weddings I’d attended. It suited us, it was a lazy morning spent in bed watching The Apprentice. Georgie was going to wear a green dress which I knew she’d look amazing in. Facebook had ruined these moments as as soon as she told me which dress she was planning to wear, I was like oh the one you wore at the Hurlingham Club for a preivous wedding. I was not disappointed, if anything she somehow looked better than the day before. I had lots of compliments at the wedding about this too. 

Dave and Alice’s wedding was at @Bristol science centre. Named when the @ symbol still seemed cool and modern. It’s actually where I did my year 11 work experience. The ceremony was in the planetarium. It also had the added benefit of having very comfortable slanted seats. Each speaker spoke with stars projected above their heads which gave it a really magical feel. Alice came in through an aisle of guests and looked beautiful. Her dress being one of the first she tried on. The lights were on for their wedding vows as apparently it’s a legal requirement to be married in good lighting so you can see who your future spouse is. Being Best Man I only had one responsibility, but instead of handing them the rings, I gave them the two boxes..opps. A very nice touch was left to the end when photos of them with friends and family were projected around the room. It was followed with a novel photography session while the whole congregation were allowed free rein over the interactive science exhibits. After this we had a drinks reception in the Aquarium. I was dettached from Georgie, and that’s what it felt like, I needed to be in the receiving line. It was an American tradition that Dave had borrowed for his wedding, it works well as a way for all the guests to meet/catch up with the people on the top table. The converation is perhaps a little forced, and having now been in one, I guess a little repetitive. After that we went to the main hall that we had kitted out the day before. It looked wonderful, loads of the congregation had beaten me there and it was a buzz of happiness. 

I started getting a little worried about my speech. The whole day was going so well I was wondering whether it would live up to the standard of the day. I’d started writing it all the way back in February whilst I was an inpatient. Not wanting to take any chances that I wouldn’t at least have some words read out or filmed for the big day. I had edited the orginal text a lot but held on to the first paragraph. The biggest edit occured when I tried to read it to my Mum realising there was a lot I couldn’t say. Then Chris Hay. But what made the speech what it was, was the many times I practiced it with Georgie and her somewhat blunt criticisms of the speech. It was because of her it was much more concise, funnier and I slowed down. Furthermore, suggesting where I should add bits of banter and toasting “Manning’s Mum”. The benefits of dating a speech and language therapist, and one who says her mind was apparent for all to see. I went on after Dave and the Father of the Bride. After seeing their speeches it was very obvious the crowd were lively but most importantly attentive and wanting their speakers to be successful. My speech went very well, with an eerie thoughtful silence afterwards. It was hard not to mention the cancer, so I hit it head on. Someone shouted “tell us a joke” and I did. The room gradually warmed up again, I raced over to Georgie, I needed a hug and when I arrived she looked like she certainly did too. 

Chris, the other Best Man started his speech, despite having read all of it, bar a few last minute alterations it was especially funny. My full seal laugh came out from the moment one of Dave’s Asian friends (I say that to make it more acceptable) shouted out “it’s because your foreign” when Chris said a line that he was only there so that in case the day didn’t work out he could get the blame. I was in bits, the audience was a little stunned, but with me and others laughing hysterically, as we knew their sense of humour, the audience quickly followed suit and laughed hysterically. The wedding was back in fun mode. Apart from complications with having pudding, I didn’t think about the big C for the rest of the day. The cake cutting was followed by Manning spontaneously break dancing and Bradshaw commentating. The wedding had it all. The Ceilidh band aptly called License to Ceilidh were very good, albeit did occasionally look exasperated at the dance floors attempt to follow their instructions. By the end it was a full on student night, with tops off and a very drunk Mark Walter. With young kids, his alcohol tolerance was very down. Dave, Alice, Georgie, I and, well the whole congregation absolutely loved the wedding with many people describing the day as fun, which is a fairly unique adjective for a wedding day.

The day after we woke up in the Bristol hotel, bright and early. Realising I could actually eat, we headed down to breakfast. We went for a lunch post wedding, the post weekend catch up is always great, be it a stag do, wedding or just big night out. These events lend themselves to daubachery and funny stories and it is always a chance to get the bigger picture of the day. Paul had slept in a stairwell. Georgie and I had a story of our own at 1am considering going to “Mr Wolf’s” nightclub when we were outside our hotel, waiting for Alice to get changed for the club. A bird pooed hitting both of us and another guy. If you’ve never had this phenomenon, which is oddly considered lucky, the realisation comes when you put your hand in poo. As it feels a bit like a warm splat on your head, one instantly rubs their hair to find out why. Poo sticks to your hand. I took this as a sign to finish the night there, Georgie wanted to carry on only removing the faeces in the morning. 

It was an exceptionally busy weekend. After this we met with a camerawoman from ITV for footage for Good Morning Britain. She seemed to want to only really speak with Dave and I despite Georgie being in the room. Then Mum and Dad afterwards. I went along with this for the sake of publicity, unsure why she hadn’t spoke to Georgie. We did a few scenes outside afterwards. Then raced back home for Grandad’s memorial. Disappointingly ITV didn’t play the footage. They have since sent me the footage and donated £200 to my Justgiving page.

Grandad, had died just 10 days before the wedding. At 94 with dementia you can’t say it was unexpected. I actually saw him the day before, he looked unwell but he’d looked like that in the past and somehow pulled through. Grandad had incredibly good genes. People say humble beginnings. Grandad was definitely poor. After his father killed himself his Mum was unable to look after both of her children and they ended up in an orphanage. So his life expectancy was probably absolutely terrrible at that time. But with a bit of blind perserverace Grandad lived a good, gentle, hardworking life. My memories of him are telling stories about him in the war. He had a reasonable time after his boat hit the rocks and spent months in Algeria whilst the ship was fixed. He loved sport, particularly slow sports and was a huge fan of Judd Trump, the Bristol snooker player. Although he was very confused when Georgie met him on his 94th birthday, he was just as pleasant and smiley as he was when he wasn’t confused. Yes he had his flaws but they were few and far between, he had a very good set of values and loved his wife, his daughters and all his Granchildren. The memorial was just right for him – so personal and so much about family. Paul, Matt, Mum and Dad had organised it all because they knew Dave and I had a lot on that weekend. Crucially it wasn’t a religious occasion, about the only thing that annoyed Grandad was religion, as far as I’m aware the cause of his father’s financial difficulties was him giving most of their cash away to the church. The service was emotional but it was a lovely occasion to be with most of the family to remember him. Overall, a jammed packed family weekend, which only thanks to Dabrafenib I was able to have

Of Science

“”I’m sorry, herbal medicine, Oh, herbal medicine’s been around for thousands of years!” Indeed it has, and then we tested it all, and the stuff that worked became ‘medicine’. And the rest of it is just a nice bowl of soup and some potpourri, so knock yourselves out.” (Dara O’Briain)  ‘ 

 
Dabrafenib Dabrafenib Dabrafenib a wonderful drug. The MRI head last week showed stable disease. So the implication is that the lesions there have been there the whole time, and therefore Dabrafenib has been breaching the blood brain barrier and keeping the cancer in check. How big the lesions were originally in my head is a worrying thought but my brain is left unscathed and no problems with how it functions (although I’m sure my friends would say otherwise). What’s interesting is Dabrafenib is the only drug of it’s type (BRAF inhibitor) that breaches this barrier. Although in animal studies suggested that it wouldn’t work, not only does it have a better side effect profile than Vemurafenib but in humans crucially in gets through the barrier. Many many many chemotherapy drugs do not do this. I have therefore come to one humbling humbling conclusion I am on the only drug that would have saved my life and kept it going, and that was only approved by NICE in September 2014. We will never know if I had Stage 4 melanoma back in September 2014 nor if I had brain metastases. But for arguements sake if I had presented in August 2014 only half a year earlier like I presented in Feb. I wouldn’t have been eligible for the Dabrafenib trials as cerebral metastasis would have excluded me from the trial. I would have been prescribed Vemurafenib and it wouldn’t have worked, and then I’d have only had ipilumumab to use which takes a long time to have an effect if at all, and I would have got sicker and sicker throughout that time. To put it simply good solid research is essential. The story of these drugs is fascinating and takes on good scientific prinicple, lots of drugs never make it for a number of reasons (e.g. an idiosyncratic hideous side efffect) and loads of patients are given these drugs many which would have perished because they didn’t work or because of the side effects. Actually to forget that is not only insulting to all the scientists who worked damn hard to get there, but much more importantly it soils the memory of all the patients who gave up their lives so I could survive.

 
This leads on to my next point. I by no means want to come across ungrateful, I hope you all realise that I love all the positive comments, I check my Justgiving page at least twice a day so I’ve read every message at least thrice if not more. When I’ve been in Newspapers I look at the comment sections too, and most recently as a picture of Magnus and I was posted on the CRUK facebook page it was filled with “likes” and many good comments. But the rogue comments really piss me off, because of my previous point. Comments like “The cure is out there”, “Why don’t the elite suffer from cancer”, “animal testing doesn’t work”, “They know the cure” along with arange of alternative remedies. The problem is I’d argue that those who just want to help are helping to propagate the dishonesty and the propaganda from those who want to make money. Those who are antiscience, e.g. animal rights protestors, either knowingly or unknowlingly would prefer that I was dead. Testing on animals is a necessary evil, and animal rights protestors, if you’re reading this, it would be much more progressive for you to raise money for alternatives to using animals in trials, not sabotaging others research or writing offensive comments on Facebook.

 
I’m sure every doctor has a story like this, because it’s so bloody frustrating, but on a surgical ward round one of our patients had been admitted for pain control. The patient was a 44 year old man with advanced bowel cancer, he’d convinced himself not to go the traditional route and had bought a strange chemical and some herbs off the internet. Thinking he could beat it himself by staying fit and medical science was wrong. By the time I saw him he’d been fighting it his way for nine months, he was losing badly, but he kept his resolve. Desite now nearing death’s door he still believed in it, somehow he was still dragging himself to the gym every day. He’d seen so much information on the internet he just couldn’t comprehend that it was all crap. Please, as a representative for medical science, see us first complementary therapy is just that, it’s not alternative. Although I’m not sure what happened to this gentleman I’m sure it wasn’t good and it’s likely he’s left his wife and children behind.

I’ve had countless of suggestions for homeopathy, turmeric and hemp oil. The last sounds like fun, although I wonder how much THC (the active chemical in cannabis) is actually in it. Most recently I have been messaged about “off-label” uses for common drugs. This is a little bit more interesting and the first drug which grabbed my attention was metformin. Having actually studied metformin during my Intercalated BSc. I was coating rat heart cells in it before simulating a heart attack, and it was protective, which is encourgaging because diabetic patients that are at greater risk of heart attack. However what happens in the lab far from what will happen in the human body, so you can take that with a pinch of salt. So I found an article about metformin and melanoma, and in their conclusion it could be beneficial for melanomas with specific genes but could be detrimental to others. Again this was just in the lab. What would happen in the body is anyone’s guess really. If you poured water on cancer cells in a petri dish, they’d all die, it doesn’t mean I should drown myself. Again it is helpful being a doctor and one who’s done some research as I’m able to try and make the conclusions myself. I did take aspirin for a while, until I thought perhaps this would increase the chance of one of my brain lesions bleeding so I abruptly stopped. No harm was done as the MRI head showed.

 
Miracles do happen in medicine, and I would argue that we should remain scientific about it as opposed to just assuming it’s a special diet or something else that has changed or a god in whatever form. It is telling to think actually I kept the melanoma at bay for 11.5 half years throughout medical school where on many occasions I drank heavily and lived off cheese toasties. Maybe the large volume of alcohol after a binge killed off the melanoma cells. That we will never know, but I guess probably not. It’s important to note that miracles did happen before this renaissance in melanoma treatment that we are seeing now. As a tiny minority of melanoma stage 4 patients (76 apparently)^ their cancers just spontaneously regressed. Actually 25% of patients saw some degree of disease regression*. At the time this was thought to be due to the immune system (T-Cells) and is from my understanding why immunotherapies were tested first in melanoma and probably because the patients had no choice. But the scientific way of thinking about this is why did the disease regress, how can we get it to completely regress in the patients where it has a bit, and how can we stimulate regression in every patient. This is a much more helpful way than assuming it’s god or a pill. The regression could have started when the patient was taking hemp oil/tumeric/homeopathy (delete as applicatble) and it could be assumed that was the cause, as opposed to finding out what actually happened (which is what they did). Also if it was god or something else then how do we “play god” and copy what they did in the lucky 76. If it was god, then perhaps they were giving the scientists a sign on how to help everyone else. So the cure is out there and some patients are getting great responses with immunotherapy we just need to work out how to improve that for every patient.

 
The advice is good and keep sending it, some has been genuine food for thought. Please don’t stop praying for me; a divine intervention would be very nice right now. What I am trying to say is the problem with unlicensed treatments is that they may have unintended consequences for example with me taking aspirin. If the time comes when I’ve exhausted conventional treatment I’ll consider my options. But please think about it before you send it to other cancer sufferers. Some may end up giving up on evidenced based medicine altogether and that will cost lives. After all science is giving me my Dabrafamiracle; lets keep funding it to produce more.
For more information about homeopathy please watch this YouTube video: https://m.youtube.com/watch?v=HMGIbOGu8q0
^http://jnci.oxfordjournals.org/content/93/14/1047.full
*for once I feel like a reference is necessary http://jnci.oxfordjournals.org/content/93/14/1047.full

Of Blighty

I guess it can come across as quite an arrogant thing to say, but I’m well travelled. This has helped to soften the blow now the traveller in me is grounded due to not being able to fly. However despite frequenting many hostels across the world I have refrained from either having dread locks or carrying a guitar. Ok looking at the map there’s some big areas of white but a significant amount of blue too. On the map even things which aren’t countries such as Jersey and Guernsey are ticked off too. Nevertheless perhaps it’s clear I may have done it the wrong way round, people tend to gap year on the other side of the world then take short breaks around Europe. But I have no regrets Europe is a fantastic continent and varies over a much shorter distance than perhaps any other continent of the world, it is a very full continent with the hum drum of human existence. It is probably reasonably unique, that the closest country I now haven’t been to is Lichtenstein.

 
So although it will ultimately change my life a lot, I’m not actually that annoyed about it, obviously I have a much larger problem but at least I’ve been to a lot of places and by doing so I came to one humbling conclusion. I liked the UK best. It seems like an oddly nationalist thing and I guess a distinctly unbritish thing to say, we love to moan about it. Yes if I was in power I’d change quite a few things; for a start immunotherapy would be growing on trees. Many Brits aspire to be elsewhere, somewhere hotter or closer to the beach, but then why are so many Australians here!? Whenever I’ve gone away for a long time I’ve always missed Blighty and come back being thankful to my country of birth.

 

We have the international metropolis which is London, combined with fantastic countryside. Going to Center Parcs last week, in Wiltshire, plus Arran before it, and just living here is a reminder of what we have. For anyone who hasn’t been please book a trip to Centre Parcs, it had been over ten years since I’d been to one before that time in the lake district, and I did have quite a niggling to go again. So we hastily booked a trip there to get over all the unpleasantness of having to cancel a holiday to South Africa. A big advantage is that the one in Longleat is next door to the Safari Park. Dave, Mum, Dad and I went for a week there. Starting with the animals first. Dad still bought his mega zoom camera lens looking like the most serious photographer on the Safari bus and we saw the big 5 and more. We also found our way around the maze, me beating Dave to the centre on a second go, then headed to Center Parcs.
The only annoying thing about Center Parcs is the spelling. We planned a pretty full on week and Dave chalked up our schedule on the villa’s blackboard so we knew what we were doing, when. We brought plenty of board games with us too including Catan and Bananagram. Quad biking was great, Dave managed to capsize his on the last corner. We did laser clay pigeon shooting which I was quite bad at initially thinking like the real thing I had to aim where the clay was travelling to, forgetting that laser travels at the speed of light. We played squash, did the high ropes challenge, played pool and also went to the spa. The spa had over ten rooms imitating every culture’s type of spa from Turkish Hammam to a Finnish Sauna. The subtropical swimming paradise, ( I was expecting a swimming pool in a large humid greenhouse), was a long way from subtropical or in other words very subtropical; with the water being quite cold. It was a bit warmer on the subsequent days so perhaps that was down to a fault. The fact the whole site is pedestrianised and set in amongst trees it does have a utopian feel to it too. The downside of Center Parcs is it is quite expensive with each activity being more than you would pay outside of the centre, but if you have a chance and can get a deal on accommodation go for it.

 
Center Parcs in a way is symbolic of our country’s fashion of taking others best bits. It’s a Dutch concept which gives us access to sports from around the world, whilst selling French food (we went to Cafe Rouge), being able to swim in a paradise and it has a spa inspired from many of the world’s cultures. What I’m trying to say is, in this country you’re not very far from the best things of somewhere else. With the comfort of being able to speak English, the knowledge that crime is going down, healthcare (for the time being at least) is free and there’s no guns. Please check out the below link.
http://www.mirror.co.uk/news/world-news/american-mans-hilarious-take-british-6582891

On Sunday, Georgie, Matt and I along with many other Leicester Medics new and old completed the Leicester half marathon. We stuck to the slowest pace of the three of us and just kept at it. Georgie and my training had something to be desired, having only ran up to 12km. It was heavily disrupted by my setback and Georgie fracturing her ring finger just a week before. She slipped on a loose paving stone on Battersea bridge when we were training. So a lot of factors were telling us not to do it. Admittedly it was not a world beating time of 2:22 in fact my brother Matt has done it almost twice as fast, but I think we all know I was the fastest one with stage 4. I personally found out Georgie is one tough cookie.  Not only because she ran a half marathon with a broken hand, but we elected to go for a Thai massage place afterwards to try and limit the inevitable post exercise stiffness.  I was expecting a nice pleasant experience like any other massage I’ve had. This started with a lady whacking my sore calves and thighs as firmly as possible, followed by forcing each limb into positions they’d never been, then it ended with her yanking all my fingers out of their sockets. Added to this I had to watch my girlfriend undergoing similar treatment in the next bed. My male protective instincts were heightened, but she looked very relaxed. Afterwards our sore and now bruised bodies, were not up for cooking, we went for a curry and I slept better than I had for ages.

Yes, the big C may have taken a lot from me and next week I may find out it has taken more, but it has yet to take my spirit. The show must go on.

Brigette Bardot Likes Kinky Cool Men

Bad news. As I prefer it this way I’m cutting straight to the point.
Melanoma is in my brain. I had a routine MRI head on Wednesday which was organised by my team to check that I was ok to go to South Africa this week. The lesions are very small, which is how they avoided the CT head scan I had in Kingston, but they are there. I have cancer of my most important organ. The question now is when did they get there, were they there from the beginning or is it new. If it’s new, this means Dabrafenib is no longer working and I’ll urgently need to start immunotherapy. If it’s from the beginning, which is most likely as I’ve now had a repeat CT head which was again normal, it’s still a disaster, but less bad, as the Dabrafenib is probably working on these lesions and therefore the disease is stable. MRI is more sensitive for CT so CT could have missed them. There’s possible shrinkage in other areas so Dabrafenib is definitely working from the neck down. I’m having a repeat MRI head in a few weeks to find out, then I’ll stay on Dabrafenib if the disease is stable. This news comes with further negatives, firstly I have to surrender my driving licence due to increased risk of seizures , and I’m under strict orders not to fly. The no fly zone around me is imposed because if these lesions are doing something I need to be close to the Marsden, secondly I have an increased risk of intracranial haemorrhage (a bleed in my brain) and seizures. I guess if turns out to be what we now hope for, at least I had months of blissful ignorance, where I happily got on a plane and drove a scooter.

 
This week has been hell. Melanoma is a cruel cruel C, it seems to strike me in ways I least expect and it somehow managed to lie there in plain sight. It’s crafty and secretive. This week as you know had been a very positive one indeed, even the Daily Mail managed to write a nice positive article about me and the NHS. I found out the news on Thursday, the clinical fellow who I’ve seen regularly, rang me about 11am. I’d just got back from my interview on Leicester A&E and had been accepted to work there for two days a week, I wanted the job as it’s literally next door to Georgie’s house, I could do with a bit of cash, and it would be a bit of routine work. I’d got to a point in this hideous affair where I was feeling quite settled and longed for a bit of … normal. I even practiced with both Dave and Georgie for the interview, although I’d heard most A&E interviews are a farce, basically it’s do you have a medical degree? do you speak English? Within what seemed about thirty seconds, into my introductory spiel, the consultant had turned to the A&E manager and said to give him some shifts. At around 10.30 I called my parents they were ecstatic. It was a chance for me to keep up being a doctor without much stress.

 
11am… the call. The Australian accent down the phone, I knew it was bad news. There was a pause my line was bad and I gave them Georgie’s number to phone back. Ring I answered, Still she said a bit more stalled, “I know it’s bad news” I said. A little more words, she’s clearly at practiced the right way to give bad news, but there’s never a right way, I knew it was bad. I swore I think. We cried a lot. She mentioned repeating the CT. I phoned Mum and Dad back, the illusion was over, the big C has taken my normal life. I didn’t know what to do, I was waiting on their plan, I phoned back and left a message and said I’d be up for a scan ASAP. Georgie and I dropping everything, Mum, Dad and Dave all diverting their journeys straight to the Royal Marsden. We played Charades on the train; a welcome distraction. Met Dave at St Pancras and went. On the Piccadilly line we bumped into a Psychiatrist that I was under as a medical student, he asked me why I remembered him, he asked if it was either because I was really good or really bad teacher. I replied it was because he was good, remarking that I wouldn’t have bothered to say hi if it was the latter. I told him I was off to the Marsden, he told me he’d pray for me. Just as we left the train he told me in islam if you pray in return it’s more likely to be heard. The CT was performed, I’m usually very affable to the staff, but I literally couldn’t say anything without getting upset. After the CT at 5.10pm I got word the Prof. wanted to see me. He’d got his best melanoma radiologist on the case to report the scans as soon as possible. As a junior doctor who’s fought radiologists to allow their patients anywhere near a scanner, it is enviable to have that much influence, but as a medical director you’re everyone’s boss. He saw me at 5.25pm along with my Cancer Nurse Specialist, they weren’t getting paid a single pence for it. It was exceptional service and it helped me understand the situation. I got the impression that they’d begun to think I just might pull off this miracle. Having brain mets makes this already exceptionally difficult task even harder. The issue is the blood brain barrier, which splits the brain off from the rest of the body. There was a suggestion that the new therapies had poor penetration through this barrier, i.e. the lesions would be unable to be affected. The Prof. is reasonably hopeful that this isn’t the case especially for the more effective Pembrolizumab. This has been corroborated by the trademark extensive literature review by all my family. It is likely that the proteins don’t cross into the brain but they are able to switch the immune system back on and the White Blood Cells (in this case T-Cells) are able to cross the barrier and fight the cancer once more. It’s likely Dabrafenib as a small molecule does cross the barrier but it’s questionable how much. Unfortunately drug trials can exclude those with brain mets from them so this is another issue. Furthermore I was told I couldn’t drive and couldn’t fly and won’t be able to go on Safari.

 
So that’s it really. I was completely deflated; having been buoyed up by all the CRUK work, and being listed as a “Major Contributor” in their annual review. Two weeks ago I said to myself “I feel fine, well better than fine” I was really really enjoying life. As Dabrafenib crept through the “median time” I was feeling invincible once more. It is a massive set back and what’s worse it was so unexpected. I did have a slight headache for about a week, which I was going to mention to the RMH after going for an overdue eyetest on Thursday of all days. I’ve had pains over my left eye on and off for years and it’s usually because of my astigmatism in my left eye. Whether this is relevant we’ll find out, it was my understanding as my bloods were normal implying the big C wasn’t doing anything and all of my body lesions were either shrinking or stable that it wouldn’t be able to spread. This is hopefully the case and they were there all along. Nevertheless, the bad news I thought would get at some point was to be told the big C was Dabrafenib insensitive, I’d planned which trial I’d go for; and if I wasn’t eligible I knew my plan B too. Since Thursday I’ve been in hiding, I’ve told only a few people, I’m very uncertain about my future and how much to plan. I try to end each blog positively but I’m not sure how. That night I prayed back.

 

The title of this blog is from a weird medical mnemonic I was told by a doctor when I was a second year medical student. It was so odd it has been stored in my long term memory, it’s a way of remembering which cancers spread to the brain. Breast, bladder, lung, kidney, colon, and melanoma.

Media Frenzy

The last two days or so have been chaos. CRUK press office have been in touch with me soon after this saga began, and for those of you with keen memories will remember me on their Facebook page many months ago. They’ve been working their socks off for this moment over the last month or so and the press team from CRUK arranged a brilliant PR boost focussed around a PR day at the Institute of Cancer Research, which is next door to the Royal Marsden in Fulham. Although in practice all the funds from my justgiving page are sent to CRUK on a weekly basis to their big pot of cash, we suggested that the money was for a specific project for a CRUK funded PhD student who is currently working on a clever project, which hopes to improve radiotherapy in the future. Some cancers are particularly resistant to radiotherapy and they’ve found a new type of drug which inhibits a DNA repair enzyme (ATR). The student, actually a registrar in oncology who has taken time out of his clinical placements to do both a lab project in this drug and well as starting a phase 1 clinical trial. 
The first person from the press to call was from the Press Association who wrote the daily mirror article all those months ago. However, instead it was their health editor who phoned, she was very friendly and told me that her mother was currently in a hospice with late stage cancer. She was much more focussed at trying to get an accurate and nice story instead of a sensational headline as her colleague had done before. Crucially she included the link in her article too. The nice story she went for, and there’s lots of nice things to choose from, was the relationship I started with Georgie. After sending her the photos, she emailed back to say how happy we looked in them. The main photo she chose was of us on the Isle of Arran. Again and this seems to be a reasonably common theme with journalists, she didn’t tell me when or where it had actually been published. A quick email would suffice! There was two errors though… firstly my family home isn’t in Wimbledon, that would be nice as it would be worth a fortune. Secondly apparently my girlfriend is a Georgie Latchman, and not Georgie Latcham. There’s only one Georgie Latcham and she isn’t worried of this imposter. 

On the Monday I had planned a day out with Matt and Kiran in London. It was the first and probably last time I had to leave a museum to spontaneously have a photo shoot, this was for the Evening Standard. Perhaps to the annoyance of the photographer they didn’t use any of the pictures he took in the article. The reporter instead went for one of my twin and me, as he went for the twin narrative and the fact I’m massively excited to be Dave’s best man very shortly. The best man speech is well under way!

Tuesday Tuesday Tuesday was well, mental. Cancer Research UK had said that they wanted to get in every newspaper and well I’ve lost count. Over twenty local newspapers from around the UK and Ireland ran the press association article. After reading all the articles I’m starting to believe my family home is in Wimbledon; that many people can’t be wrong. We arrived at the press release and we had a talk from a Prof who was supervising the PhD student’s project. He did a talk and welcomed me to the institute of cancer research. I took the opportunity to; and there’s personal benefit to doing these things, talk to the Prof about a trial of Pembrolizumab (PD-L1 inhibitor) and T-Vec, which I may join if I become Dabrafenib insensitive. T-Vec is mutated herpes virus which only infects melanoma cells. Indulge me slightly for a bit and the Prof went into this, but it’s interesting why these trials are delayed. The trial initially was going to be Pembrolizumab (control group) Vs. Pembrolizumab + T-Vec (treatment group) however this wasn’t approved initially  by the FDA (Food and Drug Administration – USA) because they wanted a placebo injection of the trial arm. Therefore Pembrolizumab + Placebo as the Control group. As the injection is quite invasive I guess the researchers wanted to forgo this from the trial, nevertheless a placebo increases the validity of the trial. 

After the talk I was taken to the lab where the PhD student showed me his research, three times to three different camera crews. If they can repeat what occurs in humans from what is seen on the petri dish it will be very impressive. Quite simply they had cancer cells and then gave them drug/radiation and/or both all combinations, it was marked how few of the cancer cells survived after given both drug and radiation compared with radiation or drug alone, as these cells typically repaired themselves after the radiation and the drug it is thought stops this repair, therefore making radiotherapy much more effective. It may work in lots of different cancers or none when it is first used in humans, but this really is a very novel new attack method on cancer. Fingers crossed it will be as effective in humans, it’s not unfeasible to think I may be a recipient of it one day, perhaps in their phase 2 trial. The crews were from BBC London, ITV News and London Live (no I hadn’t heard of them either). For anyone who hasn’t been on TV there’s typically only one camera so it involves repeating yourself and actions a lot so they can have the multiple views we’re used to. For anyone who hasn’t done it, there’s a weird skill one needs to have, which actors must have and I certainly lack. This is being able to mimick what you just did and keep both your actions and tone of voice natural. All these interviews had been sprung on the PhD student, and I thought at least one/two TV crews would be there but not three. I enjoyed watching all of them, the BBC focussed a little bit more on the research and the ITV one more on my personal story. The reporter had actually read all the blog, she liked it too. 

So was it worth it? It was very tiring and I was shattered afterwards, as much as I’ve talked about it over these last few months, it’s emotionally tiring too. I’ve had many more hits to my blog, and raised over a £1000 more and counting. But the money isn’t the most important issue, it’s about publicising the bigger issue and my story is powerful it acts as a reminder to people that we both need to do more research, but highlights the need for the NHS to fund these treatments. I’m a costly patient, so are many of us, but shouting my story around reminds people what great work one that the NHS does and two how far research and drug development has got. As the cost of my treatment is more than 2 teachers per year, to think funding cancer drugs isn’t political is a massive oversimplification. I and others need to plug the cause to remind politicians and taxpayers why they are paying for it… because they work! I’m preaching to the converted on this blog, but I’m thinking of the people on question time who say things like “surely the NHS can’t need more money?”. The emergence of efficacious yet expensive drugs is a conundrum for the taxpayer and NICE because before they could turn down treatments because frankly the evidence/efficacy wasn’t there to justify the cost. But with Dabrafenib and the newer treatments it would seem that they are too good not to fund, which is brilliant news for me. This is highlighted by NICE approving Pembrolizumab (with their trademark “undisclosed discount”) so quickly. It was approved just this month. Pembrolizumab is one of the two PD-L1 inhibitors and until that news I was thinking we’d (my parents) need to pay for one of these types of drugs at the market price. So as it stands my treatment will be continue with Dabrafenib, then I will receive Ipilimumab if I’m a non responder then go onto Pembrolizumab. A treatment course I’m pretty happy with however I’d prefer to have Pembrolizumb first as it works in a much larger number of patients, then Ipilimumab afterwards. NICE has realised that it is slightly counter intuitive to give the lesser effective immunotherapy first, therefore this is under review, so watch this space. My story goes to show the rate of progress is speeding up, let’s continue to make it even faster. Let’s beat cancer sooner.