This has been the longest period without a blog, that’s not to say I haven’t been busy, in fact the opposite is true. There’s so much to write I’m getting the daunting pre exam feeling of “I’ve got too much to do” where only sheer dedication keeps you focussed.

For the first time I went back and reread all the blog, it’s tough reading, I actually went through and edited some of the grammar. Although I’ve had compliments for the blog I don’t feel like a natural writer. When I first write anything it is usually grammatically incorrect and the text usually needs rearranging to give the text flow and a start, middle and an end. Nor am I a particularly fast writer. A good blog will take me about three hours. But please be rest assured, no news typically means good news.

I’ve now passed the six month point of Dabrafenib, I had two scans in a month. The first at the end of July was exactly what I was hoping for, stable disease, it was a fantastic moment. It’s always a relief because I feels it’s only natural to worry that maybe just maybe things are amiss.

Just prior to the scan I went for a wee, which did not go unnoticed by staff. I forgot, nor was I reminded, that I you need a reasonably full bladder for the scan, so I got put back into the waiting room and was forced to drink. Georgie, my girlfriend, gave herself the roll of pouring a jug of water down my neck. This compounded with he fact IV contrast* really makes you want to have a wee. This is a strange side effect, but for me it happens every time. The tidal wave down my body was yet to be absorbed before going on the tube to my friend Matt’s flat. By the time we arrived I couldn’t stand up straight due to the pressure on my bladder.

Following this I started at Kingston hospital, during the induction, while I sat there with the pointlessness of it all grating at my very soul, I started getting some right sided abdominal pain. Slight pain just a half out of 10, by this I mean 0.5/10, not realising I overly concerned Georgie who thought I meant 5/10. This niggle persisted for a week, despite ibuprofen and paracetamol, so I made an urgent appointment at the Royal Marsden, who scanned me the same day only 3 weeks after the last one. But to be honest I’d rather be over scanned and accept the consequences of radiation than be caught with my trousers down. Overall I’ll be very radioactive, if I survive, with or without extra scans. If the radiation then causing another cancer, it will be years on when hopefully we have cured this stupid disease.

The second scan came back with quite surprising results. It was reported that the tumors had shrunk a bit more in the previous three weeks. On a side point my Clinical nurse specialist highlighted in clinic that “the Prof thought we’d probably lose him”, at the beginning of this ugly saga. Not quite taking the CT report for gospel I asked to speak to the Prof himself, I needed to be scientific about it. It was quite a wait, but it was worth it. He arrived to “…every little thing is gonna be alright” (Bob Marley) blaring out of Georgie’s iPhone. He seemed equally intrigued by the report and we went to see the scans. Actually I was slightly hesitant because I hadn’t seen them yet and thought it would be awful. It was reassuring actually. The Prof got right to it, the benefit of being a doctor, although you wouldn’t need to be medically minded to work out that the first scan was grossly abnormal, cancer everywhere. The difference now is remarkable, truly, it was only with a trained eye that you coud still see disease. Overall actually it’s been a gradual shrinkage over the last few months as opposed to a sudden bit in the last few weeks. I had quoted that I had shrinkage of about a third to a half but looking at the scans this is clearly an underestimation.This is because the reports quote diameter of the lesions not volume, for those  mathematically minded this is to the power of 3. Assuming the lesions are spherical, which they are not, but for the sake of simplicity, we will. If the diameter is 6cm to begin with the volume is around 113cm³ (volume of a sphere 4/3XpieXradius³) if that shrinks by half to 3cm that’s only 14.13cm³or 12% o fit’s orginal size. The difference is so remarkable I had to check the maths a few times. Dad’s done it looking at whole picture and made an approximate figure of 88% shrinkage. I think we’ll say between 80-90%. Dabrafamiracle. Afterwards the Prof passed on my regards to my family, a true gent.

After a sports match you hear people say “yeah I’d taken that result beforehand” and that’s where I’m at. This is great news,  I don’t know how long it took for the cancer to grow and spread as far as it did but it does not happen overnight. This result is way beyond my expectations six months ago. As Dabrafenib efficacy wanes, which will most likely come at some point in the next six months (hopefully longer), this gives me time to get established on the next treatment without getting symptoms and becoming unwell.

There’s still so much to talk about.

The first https://www.justgiving.com/DavideBertone-marksims/

A young man, ran  a 10km run in 52 minutes, he’d had not done anything like this before and raised a lot of money for the cause. Davide was in the audience when I spoke at Westminster school and was inspired to get out there and help me out.

The TV programme, wow, what a response, what a great thing to be a part of. My personal highlight was Bill Turnbull saying my name on BBC breakfast. Being a part of the programme showed me how much effort goes into a TV documentary. The producer gave up most of his life to get the show out there. Rowena showed so much of her courageous personality throughout the show. I cried because well emotionally it took a lot out of me. They asked me whether I was happy with the footage when I went to Cardiff to see the draft. I was, because it acts as a record of how scared and frightened I was at that time, and how truly awful it is having cancer. The more we shout the sooner we’ll beat cancer. I was very pleased that some of my own footage made it into the show, from my holidays to Luxembourg and Malta, the producer had the pleasure of going through 35 minutes of dross footage for the only usable snippets. For example, the Malta footage was blemished with the other guys deliberately “product placing” obviously something that’s banned on the BBC. I spoke to the producer just last week and there is a plan for a follow up show, so watch this space. Furthermore, out of the hundreds of emails they received after the show, I had one marriage proposal!

I’ve also been on holiday again… twice. The first was a short trip to Nice, with three guys. It was a lovely place and packed full of great restaurants, great bars  and a decent beach, albeit pebble. It was difficult getting the holiday started as the French were doing what they do best… striking. The taxis were out in force against the introduction of Uber in their city. As much as Uber is taking over the world, if anyone hasn’t used it it’s just a much better way to order a taxi than before (please use my promo code for a free journey L3838). When we finally arrived at the hotel, something was quite strange, the architect had taken open plan to the ultimate degree with a shower literally in the middle of the room with both double beds facing  it. We had two days on the beach, one day in Monaco and one day looking around Nice. It was all very pleasant and very relaxed, each day, the one with immaculate hair. and I would compete to find ever better restaurants, so by the end we went to a Michelin recommended place which was quite simply superb.

The second holiday was to the Isle of Arran with Georgie. It is an island off the west coast of Scotland, nicknamed “Scotland in Miniature” due to it’s small size but dramatic landscape. I’d highly recommend it, despite it not being a well known destination to go to, especially for those of us who live South of the border. The reason for going was based on the principle that it would be nice to go somewhere beautiful and get lost. It was excellent. We hired a car at Glasgow airport , got a free upgrade to a Vauxhall Corsa, and then headed to a B&B on the coast. We took the ferry over the next day and headed straight to the island spa, for a head and back massage. Totally chilled out we napped in the rest room had some food then headed to our second B&B. We drove around the island at sunset which was past ten pm, after having dinner in a pub. The next day we hired bikes and cycled to Brodick castle, a Victorian highland escape, and despite wearing fluorescent cycling gear pretended we were lord and lady of the manor. Straight from there went to Georgie’s surprise trip, a forest safari  called “mogabout” we drove around in a large 4X4 bus (a converted Mercedes Unimog 16 seater vehicle) and guided by a proud Scot. It was a great way to see the island quickly. The trip ended at Giant’s graves where he got us using a native american technique, of one of his former customers, to sense the spirits. Obviously this tested my innate scepticism, but I went along with it. The next day the weather was looking ok so we decided to climb up Goat fell the largest hill on the island at 2800 feet. We were around 2/3 of the way up before it started hailing and got very windy indeed. Georgie was desperate to carry on, despite us both freezing in our inadequate cycling jackets. The scout in me overrode any other feelings and the unlikelihood the weather was not  going to get better anytime soon, I insisted we head down. The Saturday was a wash out and we drove around the island getting afternoon tea and popping in and out of the roadside attractions. The last day was sunny and we headed off to our own little beach, before we headed off the island.

Lastly, as of today, I’ve now finished my FY2. Finally, Annual Review of Competence Progression has been signed and I’m free of South Thames Foundation School. The last four weeks spent in Geriatrics was very good actually, it was ghostly being back at Kingston but I gradually acclimatised, I met with the specialist skin care nurse, who looked after me as a patient, in costa. It was a great way to reflect back on the past and put it behind me. It was nice to get to know her as a person, especially as she was there during such a difficult time. She told me she was proud of me, I reiterated how I thought she was such a great asset to the NHS.  I’ve been invited to speak at the conference of British Association of Skin Cancer Specialist Nurses, to talk about life with skin cancer and to write in a Journal.

So here I am, ready for the next six months. Treatment is working and has work well. There’s plenty of stuff lined up to continue spreading the message, plus a few friends and Georgie are running half marathons to raise money. I’ll be going on Safari with my Dad and Dave in South Africa, and most of all  I’m happy. For a man, with a four month prognosis without treatment, that’s awesome!

Through a weird twist of fate, I went to Kingston Hospital again today for my ID check, as I’ll be starting there from the 5^th of August (AKA Black Wednesday) for one month to make up enough FY2 time to be signed off. I’m not entirely sure why I was placed in Kingston; the whole process went on without my consultation. It was an eerie experience parking up and walking through the main entrance, the last time was all more dramatic stumbling out of the back of the ambulance, I still wonder why the paramedics only gave me paracetamol for the journey. As I walked through the corridors I had a vivid feeling of my mind being soaked in morphine, reminded how it literally washed away any pain and any cares I had. It’s like a warm bath for the mind, it feels good at the time, but you’re problems remain. The purple badges, all the members of staff were wearing today, a stark reminder of the skin cancer nurse specialist’s. The badge which said a thousand awful words, all at once, without a sound.

So am I glad to be going back? I do feel that they (South Thames Foundation School) could have rung me to inform me of this decision and maybe asked if I was happy to work in a hospital where I was diagnosed, I am I think, in my job as a doctor I will and have got stark reminders of the diagnosis. A friend said at least you’ll know the way around, I doubt that actually, I spent most of the time high in a side room.

St Helier, my current trust, have been fantastic and they gave me pretty much all I asked for and more, my psychiatry placement albeit a little slow has been a good reintroduction to work. I had hoped that I would be placed in St. Helier A&E for four weeks to make up the time, which was offered to me by St. Helier, having worked there as a locum it made sense. Unfortunately the foundation school felt that I had to be given a proper FY2 position instead of having one made for me. They told me by email which I received just as I was about to get on a flight back to Gatwick from Nice. The email, despite saying it had considered my circumstances, didn’t seem personal at all, and frustratingly said that I had to work for 4 months in Geriatrics. This was not in my master plan, which is to finish FY2 and locum 1-2 weeks a month and have fun for the rest. Instead I had an angst ridden trip back to the UK thinking I’d be stuck working for another 4 months just to be signed off. They’ve since apologised for the email.

The day after my holiday I rang and got in writing that I only had twenty days of Fy2 to do… this is a farce! For 20 days work, along with the ID check, I have to: attend two induction days, complete large forms, see occupational health and do online e-learning modules. I do feel it could have been easier to stay at St. Helier where I could have been manning the fort on Black Wednesday while everyone else was in induction. Furthermore hospital inductions are largely pointless, and go a little bit like this, infection control, library, fire safety, dementia screening, and venous thromboembolism assessments the latter two, because hospitals get paid to do them. The second induction day will be how to use the IT system, it’s the same as Croydon, where I worked in FY1, but I’ll have to sit through it nonetheless. I think it’s telling that I managed to go through the whole induction day at St Helier blind, because inexplicably my glasses arm broke off on my way to the induction whilst sitting on the bus. I had two choices either be the guy who’s got broken glasses or pretend I could see. Considering I’ve got a whole blog about having curly hair I’m sure you know what I chose, the vanity option. The trouble was I had to go around stations filling in forms and sign registers, to find my name I had to lean down very close to the table to find it. Fortunately another former Leicester medic turned up who acted as my guide dog. It made no difference to how I was throughout the year, I still washed my hands.

While I’m at Kingston I’ll take the opportunity to update the specialist skin care nurse, the specialist pain nurse and the ward where I stayed about my progress. I think they’ll all be a little bit surprised to see me, I’m definitely surprised to be able to walk in pain free with a stethoscope around my neck.

One of the stages of grief is anger. Maybe I am angry, maybe I am.
It is difficult to know really, I think frustrated is a better word, working in psychiatry doesn’t necessarily help this, but then I’m not sure A&E would too. I say A&E as this is what I swapped from, but actually it could be almost any speciality in the NHS, apart from perhaps pathology. 

A psych letter tends to have quotes from patients in for example, John told me he was hearing voices telling him “to steal from Lidl” as well as more innocent quotes john described his mood as “all over the place” today. The rationale for doing this as opposed to just writing John gets command hallucinations (“go on steal that”) or John has an erratic mood. Is that the way they describe it can be suggestive of different mental health diseases, for example an erratic irritable mood that varies quickly over short periods is more likely to be Emotionally Unstable Personality Disorder (formerly called Borderline) but over longer periods is more likely to be bipolar affective disorder (historically called manic depression). As this is quite subtle quoting makes sense it also highlights what risks they have for example it might be best to encourage John to stay away from Lidl.

The reason for telling you this was in a recent letter that I read the patient said “I feel like I’m wasting your time” he actually went on to say “I feel like you’re wasting resources which could be better spent on other people” . The problem I was tempted to agree with him for half a second. But I wasn’t I’ll explain. Emphasising that in bold. He, like me, is perfectly entitled to NHS treatment actually, unlike me, he’s worked for most of his life, therefore has paid for his treatment, if I survive I doubt I’ll ever pay enough tax to cover it. Then it got me thinking actually he’s in the minority actually thinking that as there are tons and tons of patients who waste NHS money everyday. Those who spring to the GP when they cough once. The bed blockers… Typically “older persons” (historically called elderly until that was banned), an idiosyncratic term, because for me this incorporates anyone 28 and above. Anyway these older people who stick in bed for months and months not because they are having medical help, but that their package of social care, be that a nursing home or carers at home has not been arranged. I used to think this was typically because of obstructive families that want to keep their inheritance. Although in the case of my grandad recently leaving hospital I realised that it was mostly delays from the NHS, for example asking my mum and auntie to look around nursing homes, to see if they were suitable, which were full.

What I’m trying to say is that I am now much more wary of NHS inefficiencies, and I don’t like seeing money wasted, as my treatment depends on the NHS being able to pay for it. A recent audit by Lord Carter suggested that we’re £5 billion worth of efficiency savings that could be made. That could be accurate I’m not sure, but £5 billion is a lot of immunotherapy. For that perhaps I’d be able to consider cryotherapy and wait five years when the research has matured and the guidelines have a clearer idea of what to do. Remember it’s our NHS don’t go out of your way to abuse it, it’s inefficient enough!

The patient I’m actually talking about responded well and is getting on with his life now. However I’ve seen patients who are so wrapped up in their own paranoid delusions and hallucinations from schizophrenia they’re unable to embrace reality.

I guess what I find the hardest is seeing people waste the thing I want most of all… And that’s life. I love my life, I’ve got a job that’s secure and although my colleagues moan, well paid, and I actually enjoy it most of the time too. I’ve been a best man now! thanks Gav. Lastly, to mention her for the first time I’m well into a new relationship!!! To be fair it wasn’t what I expected when I woke up that morning. I don’t want to be too soppy on here but be assured she’s wonderful. So life can be great even when it looked so bleak. If you’re ever in this position just keep on going!!!

Side point:

By the way I’ll be on Iplayer on the 21st of july 10.35pm it’s BBC one Wales so you’ll have to stream it if you want to watch it live or obviously you can catch up. The programme is called “Before I Kick the Bucket”.

Wear sunscreen
“If I could offer you only one tip for the future, sunscreen would be it” as goes the song. But which one. I’ll tell you  which one I use from my own meandering experience as it is a question I’ve been asked occasionally over the last ten years. This is after all because my risk of another melanoma was very high and sun exposure is associated with melanoma. So which one, I haven’t tried all the brands and please note I have no conflicts of interest. However over the years I’ve perfected my technique, which has only failed once, and that was jet skiing for an hour in Belize. I was quite pissed off afterwards, but it was just a little reddening and went away in the morning. On advice from a friendly pharmacist I was recommended P20 sunscreen. It goes up to factor 50 and actually lasts all day, and is pretty waterproof albeit not immune from spray from a 40 mile an hour jet ski. Despite the assurances on the packaging that it lasts for ten hours, I’ll typically reapply after going in water and after about five hours or so. Further to this depending on the day I’ll use another sunscreen on top any old brand to top up every three hours or so. The further applications are in case I’ve missed a bit. The major drawback is that P20 stains any white clothes a subtle yellow colour, so wear colourful clothing and have a shower before you change. 
It’s my personal opinion that sun cream is the only anti ageing cream that actually works, if you really want a tan, get it sprayed on. 
Warning: Your colleagues may forget to ask you about your holiday on your return to work.

It’s been an if and when fortnight really. An “if” time me thinking “if I beat this”, and a “when” time is when I beat this. The latter being wholly optimistic, by this I really mean survive two years from diagnosis, which would be significantly longer than if there was no treatment. By this point as things are being developed at a ridiculous rate there will be more an offer and I’ll be able to take the next thing. The “when” time began on the release of data about a combination therapy (ipilimumab and nivolumab) showed great promise and in fact one of my consultants Dr James Larkin was the first author on the paper and also interviewed by BBC news. Highlighting that I’m definitely in the right place.

The “if” started on Monday the 8th I rang my cancer nurse specialist and got my results for my latest CT scan. The overallconclusion of the scan was it was stable disease, I.e the beast is stunned. No more shrinkage. Although she also mentioned an “ill defined area” in my liver. This is what scared me, what if it was ill defined, because it was growing. That was my first conclusion. However being in clinic on Thursday, it is clear this is more likely to represent an area which perhaps got more shrinkage than others, therefore is no longer spherical, and is a normal thing to find on a scan of someone treated with a BRAF inhibitor. This correlated with normal blood tests, which I didn’t have the reassurance of on the Monday afternoon when I found out.

Most of my family came to the appointment and we gave the Specialist Registrar, who saw me, quite the onslaught, however a few interesting management things became clearer. As it stands the treatment course will be dabrafenib until it shows definite signs it’s not working (although there are cases where BRAF inhibitors have been used for years). The next in line will be ipilumumab, which about 15% of people respond very well too, then pembrolizumab as this is the only drug which has NHS – early access to medicines scheme funding. The latter somewhere around. 50-70% respond too with some doing exceptionally well. So what about the combination I hear you ask well it’s too premature unfortunately. Nivolumab is not currently funded by the NICE, it most likely will be but guidelines don’t necessarily keep up with the rate of change*.

So I think I’ve learnt the hard way of having Chinese whispers. I wanted the result early because I was a best man on Friday, for an old school Friend. I also think for probably the first time in this saga being a doctor made me more anxious than if I wasn’t medical. But I leave you on a when, an old Leicester medical student contacted me who works for another oncologist, she shared with him my CT scan and my history as they are trialing another treatment (SCIB1), he felt that currently in the hands of the best care and suggested I should carry on.

 

 

*please by no means think this is an attack on NICE, an organisation probably more worthy of your taxes than any other. I’m fully aware that this is an opinion unqualified by references or even an tangible comment. But get over it.

Hmm I fear that may not convince people. I’m sad enough to admit I even have my favourite NICE guideline CG174 fluid management in Adults. Medics read it, learn it, tell your colleagues and most of all tell your consultants… That they’re doing it all wrong. Apart from guidelines, NICE have a major role in new drug/technology appraisal by working out it’s cost effectiveness it does this in part by calculating QALYs (quality adjusted life years) for each new medication. Once NICE approves a drug the CCGs (clinical commissioning groups) then have to fund it. It now has quite a high value limit it goes to for treatments, but it only funds what it deems effective. The drug companies have to run trials to prove their effectiveness like the combination trial above, which takes time. The things it rejects are those that are either too expensive, or too ineffective or both. The big advantage of having NICE is it actually forces the drugs companies to bring the prices down as the UK is such a large market. So for many new drugs the price you’ll see in the press or the medicines bible BNF may not actually what the NHS pays, as NICE have negotiated an undisclosed discount. As NICE recommendations and guidelines are used internationally it means drugs companies are desperate to get their approval. It is why we pay a lot less money here for drugs here than in the United States. It could be the only argument for not breaking up the NHS, apart from there’s loads of other great reasons for that too.

I had felt that I was being exceptionally lucky not having a single side effect from my medication. Thanking Dabrafenib every day for being so selective to the BRAF protein. However that is not to be. Over the last fortnight I’ve noticed that my hair was subtly changing in plain sight. The first thing I noticed was a reduction in my chest hair. This was confirmed while staying in Oxford, with some of my old housemates, who actually thought I’d become more metro and had started shaving it off. This would be unlikely, I like my chest hair. I actually remember doing a crude survey years ago I think on the halls bus in first year. Probably to make my friend, who has seemingly missed puberty, jealous. About a third of the girls liked it, a third were indifferent and a third liked a smoother man. So even if I was that vain its pointless. I realise that a collection of medic girls, at 8am, with a hangover feeling nauseated from the bumpy ride down Radcliffe road aren’t exactly representative of the UK female population but we will pretend they are.

Secondly and perhaps more subtly was a wave going through my head hair, I have enough hair so it’s worth differentiating! I initially thought I was mistaken or it was due to wearing a motorcycle helmet. But no, it really has become curly, well curly for Dave and I after all we share the same hair. The biggest confirmation of this was at a pub quiz last week with all my brothers. Dave shared my shock at this realisation. Matt whose hair I seem to have imitated, was not particularly sympathetic, and Paul who has lost his hair many moons ago was even less so. For me it highlights a couple things. Firstly, I’m not side effect free and secondly, if I survive this, I may not just have different values and opinions (it’s character building but I wouldn’t recommend it, apply to be on Bear Grylls the island instead) I’ll probably look different too. I’m hoping the hair will stay, I look at bottom of the shower and see a couple of hairs floating away, goodbye old friends, but then again that’s definitively normal, isn’t it? As my hair was so straight before, actually only by comparing me side by side with Dave is it so obvious of the change. Never did I think Dave would be a point of reference of how I used to look. Although Dave and I have never been tested, if I was a gambling man, I would bet on that we share the same genes. However most people can tell us apart, even when Dave doesn’t have a beard. The strange thing is there are a few people who are useless at it, which has led me to think there is an epidemic of mild facial blindness (a condition where people cannot  recognise faces), but that discussion is for another day.

A quick google search shows it is a rare side effect, with the internet suggesting it is has only happened a few times before. It is a reminder that actually any treatment I take, is a dice roll. Quite simply not enough people have had these treatments yet to fully know all the side effects that are possible. I can’t remember the actual number, but I remember from my pharmacology lectures being told you need to give a drug to a very large number, millions, before you can truly guess it’s effects on all humans. Dabrafenib has probably only been given to about 10000 people at a high estimate, the others even less. You have to think what choice do I have, which is none, if at the beginning they said here’s the side effects pick a few, curly hair and mild chest hair loss would be high up on the list of those I’d opt for. 

No news is good news, the rate at which I’m blogging has subsequently declined. The latest blood tests the liver function tests and the LDH (the marker of disease activity) were both normal, so it’s very likely the C is not doing anything. I spoke of this in a previous blog, and being back to work has been very positive, as it really has given me a chance to “move on”. The difficulty however is that it is not a problem that will go away, at least not any time soon. However there has been the odd reminders of it, the most difficult was recognising the SHO Doctor who clerked me in at the Marsden. I very artfully avoided eye contact with her, however compared to how I looked then to now,  it may have taken her a long time to recognise me. I’m actually 7kg heavier, my eat-as-much-as-I-like diet with a lot less exercise may have to change. Although weight gain is extremely reassuring*. Bizarrely I’m even slightly taller, perhaps I was hunched over the last time. So this is more of a blog about some snippets of wrestling melanoma since MalTOUR.

The weirdest moment  was from an autistic girl in clinic. She was clearly very bright, studying biochemistry at uni, she had a lot of support to do this – a psychiatric interview we go into a lot of detail – with her own room with a computer for the exams. The thing is, she said “oh biochemistry is so boring having to learn lists of proto-oncogenes” then started listing them starting with “P16 – goes to CDKN2A”. What did she say? It is only my dastardly gene. For the uninitiated a proto-oncogene is a gene which “A proto-oncogene is a normal gene that can become an oncogene (a cancer causing gene) due to mutations or increased expression”**.

I quickly slotted back into the routine of weekly FY2 teaching after everyone was especially nice to me in the first week back. It is weird, in a nice way, when someone is pleased to see you simply because you’re looking so well. Maybe, after reading this, spend the next hour thinking how great it is that the people around you are looking so well. Anyway, by the 3rd week of teaching I was well into the flow of things, during a talk I had a particularly loud sneeze, rapidly most of the people near me turned to look, maybe it was in my head but they looked more concerned than usual, I grinned “don’t worry I’m ok”. The second teaching is loosely related to the theme of this blog but it was a week where FY2’s were presenting cases** to the group, for my sign off at the end of the year this is mandatory, I thought I had some more time, but this happened to be the last week.  I had actually made the slides only a few days before becoming unwell as in all the way back in February as I was due to present a couple of weeks later. So I had to blindly present these slides, some of the slides were completely blank! Fortunately I had a very sympathetic audience who were aware of my plight, it was too long ago for me to remember what I intended to put in them. Thankfully I really knew the patients story well if you are reading this or your daughter is, like we told you at the time, we will be presenting your X-rays for years to come.

*weight loss occurs partly because the cancer uses up energy reserves and I had a few days where I barely ate. In my case it was because I was running long distances all the way up until I was diagnosed.

**if I’m going to reference anything it’ll be wikipedia.

***patients who are particularly interesting this can be for many reasons, for example, if their disease is particularly rare, if they responded well to treatment, if they offer a learning point to the audience or if they presented in a strange way. Hopefully I’ll be the latter three.

As you’ll all hopefully remember, part of my bucket list was to go to every EU country. Well I’ve now done it. Malta and Luxembourg ticked off since diagnosis, literally leaving the smallest until last. I thought big and it paid off, inviting a large number of friends and managed to get 20 people on the same holiday to Malta. Staying in a hotel in the heart of St. Julian’s, one of the most touristy areas of Malta. After arriving, tired due to the early start, we met up with one member of the holiday, who was part of his own landing party the day before. We went off to Mdina the old capital city and one of the highest points on the tiny island. This set the attitude for most of the trip. A little bit of sightseeing followed by a pint with a nice view. We went to the Mdina dungeon, which had comical howling manikins as well as enough information to remind us that humans have always found creative ways to be horrible to each other. Therefore a pint was required in the local wine bar.

Friday night was definitely the heaviest of the three. The atmosphere changed with a round of double tequila slammers, then ended up walking down the strip of bars. The first was great with plenty of podiums and fish bowls. The second place was a large club it was packed and I was flagging by then, it’s hard to keep your enthusiasm for a night out when you’re basically sober. So I left about two am. The other boys came in at various times with The Silver Fox being the penultimate finisher, having spent the last hours of the night trying to find our hotel he even tried getting a room at the Hilton, fortunately he was refused. But the “competition” was “won” by a repeat offender. Ending up under a table somewhere in St Julian’s without his phone, wallet, keys, and watch.

The two winners continued the holiday with little sleep, as we had booked speed boats on the Saturday.  Side point, I woke up to find my bath/shower had been vandalised by my older brother who’d emptied his stomach during the night… not only this we both came to the conclusion he’d hit the “do not turn off switch” in the night leaving the shower cold for the best part of the holiday.

The speedboating was amazing, hence why I’ve broken with convention and to my mum’s pleasure finally posted a photo. We got a minibus up to the north part of the main island. A great place to hire a boat, as it’s an entry point to the body of water that surrounds the three islands that make up Malta the country: Malta, Comino and Gozo. Comino is tiny and has the very pretty blue lagoon. With a reasonably quick briefing and some ground rules, we amateurs were able to hire 4 speedboats. Most of which, the boat of all Bristol lads, completely ignored. The afternoon therefore was spent circling Comino and anchoring at the blue lagoon to swim to buy ice creams, and listen to dodgy Maltease radio which seemed to be blaring out of most boats other than our own. On arriving back and taking the EU flag photo, I found out that the company were very generously letting me ride a Jet Ski for free. I never quite worked out what was said, but Dave had a chat with one of the guys, I think he asked why we had an EU flag. Dave explained the story, the guy collecting in our boats he bemoaned the EU… “foreigners coming over here taking our jobs”… he was English. I’ll ignore the hypocrisy, as he kindly organised me using the jet ski. We had to pay for the fuel afterwards, with the more aggressive boat using half of the total.

Saturday night was more subdued, there was whispering that people were “MalTOURed out”, particularly the gentleman who left to go to the police station missing most of the meal, any guesses who that was!? Some of the party found a Scottish pub with most of us preferring some gelato and bed. Sunday we went to Valletta, the current capital city. Albeit the taxi drivers seem to think each different parts of Malta are separate towns and villages, the east side of Malta is in effect one large urban area, weaving itself along the coast with many nice bays. Valletta from the bay’s we saw was probably the most grandiose with the large Grand Harbour just next to it. We went to the war bunker where the top generals of the allied forces organised the invasion of Sicily. This eventually caused Italy to surrender and very much put the axis on the back foot. The tour  was run by a history fanatic, which all of us had trouble understanding. A note on the Maltese language, they all speak their own language, and nearly everyone speaks English all heavily accented. It was a British colony for over one hundred years. They understand us well, but the reverse isn’t true.

By Sunday night people had recovered. Starting with the last group meal of the trip. At least going by the four restaurants we frequented, the food is reasonably expensive but good quality. A mix of Mediterranean and some local specialities which mostly include rabbit. We were keen to put the TOUR back into Malta. Hitting a karaoke pub, stealing the show with “Toto – Africa” amongst other decent renditions, particularly Roy Sin who can actually sing. Not me, my voice makes people cry for the wrong reasons. We woke up on Monday and went home.

Malta is a great place to visit, and it was a fantastic way to finish off the EU, after all I have a good time going to the other 27 too. Malta is a good mixture of pretty coastline, sightseeing, cheap drink and decent nightlife all in a beautiful part of the Mediterranean sea. Cheers to all of you who went. It was a great blend somewhere between a stag do and a more refined pleasant holiday with the couples. Everyone got on very well and new friendships were made.  Next stop GibralTOUR, TOURnisia, TOURinidad and TOURbago….

The last word, when getting around to finishing the EU and now especially now that both Dave and I completed it, people are first surprised… it is a lot of countries, many not your typical tourist destination. Then they typically list European, not strictly EU, countries “so you’ve been to Estonia?”, “yeah”, “oh and sweden?” “yeah”. Well folks, job done!

There was a period when I thought I would never work again. It’s a strange feeling, because we seem to be either looking for work or training to get a good job, or spend the rest of the time moaning about your job when you’ve got one. It was a period which reminded me how much I like my job. My only other jobs have been at McDonald’s Restaurant, a Football referee, a healthcare assistant and working at Dixons. None of which I particularly miss, but they all came with pretty decent anecdotes. Picking the best story is easy, obviously at Mc D’s because it was hilariously rubbish, with an exceptionally high staff turnover. Somehow I managed to stay there for a year. The pay was atrocious. Once upon a time, I was asked to find a particularly simple staff member, who hadn’t come back from his break. I looked in all the most obvious places eventually finding them in the corral, he’d put his head through the bars of the cage trolley… To see if he could. Interestingly he’d started lighting up another cigarette once he realised he couldn’t release his head, not shouting for help. So, I found him happily toking away nonchalantly with his head stuck. After much deliberation, we used the fat scrapped off the grills wiped it on his face and pulled him through the bars.

Anyway I’m at risk of going off on a tangent again. So my first day back. I was offered to change from my A&E placement to to community psychiatry, something I agreed to do as there was an available position. For those of you in a normal job it may seem weird, but we can literally swap jobs, if a few constraints are met. This is isn’t because I’m particularly interested in psychiatry, I’d rather be doing A and E, however it had the benefits of being a 9 to 5 job for the purposes of getting back into work mode and ease of treatment. It’s a team which deals with psychotic patients in the community, these aren’t your average depressed patient. When mental health had a decent amount of funding they would’ve been admitted to hospital. So it’s a firefighting job to keep them well in the community. The first day started well, I met my consultant and discussed my current condition. Then what I wanted to get out of the attachment. Followed by a multidisciplinary team meeting of mental health social workers, mental health nurses and doctors. My absence had been noted and one of the team asked “you’ve had a long time off, are you ok now?” Albeit I’ve put my diagnosis in the public domain, I want to work at work and I don’t really want any special treatment. I replied as broadly as possible “yes I’m getting better”. After the meeting had a lunch and teaching in the afternoon – we are trainees after all. Then I was told I had Friday off due to a shortage of anyone to supervise me in clinic, it would be pretty foolhardy to put someone my level straight into clinic without someone to discuss patients with. Therefore I was given the day off to revise my psychiatry notes from medical school. What I think surprises junior doctors when they start, it definitely surprised me, is the variation in how much we have to do job by job. I’ve had days where I’ve worked 3-5  hours of unpaid overtime consistently to get the work done. It tends to even out across the two years, but it can be pretty miserable four months in those very stressful jobs.

I’ve been told the work will pick up after I get my own list of patients. So we’ll see!

APRIL 20, 2015

The CT scan results were very good. I thought I’d get straight to the point, I was told off by someone for prevaricating on the phone when giving results, so much so, they presumed the worst. I went to the Marsden on Thursday, I’ve now had two months of dabrafenib and I had CT ( chest/abdomen/pelvis) results waiting for me. As soon as the doctor turned up, who wasn’t either of my consultants, I knew the results would be good. If they needed to urgently start me on a new treatment, I’d hope I’d see the boss. The CT showed that the tumours had shrunk by a third to a half, in terms of volume. The good points. Firstly, I’ve actually responded to the drug, approximately 20 percent of BRAF positive patients don’t. All the tumours had shrunk showing that they’re all responsive to the drug, which as they’re separate entities isn’t a given. Thirdly, it’s a decent amount of tumour shrinkage, perhaps in the top 20-30 percent of responders. There’s a caveat to this, unfortunately longevity of response isn’t associated with the quality of response. You would think that those patients who had complete shrinkage of the tumour, the drug would work for longer, as the cancer is very sensitive to it. This isn’t the case and the cancer may come back quicker and be insensitive to the drug. The oncology registrar was keen to point this out, as not to get me too hopefully, what each patient wants is a long response, frustratingly that seems impossible to predict. Fourthly, the SpR thinks my LDH is a good marker for my disease activity, it isn’t in some patients.

The bad points, well there isn’t any really. To be perfectly honest I didn’t hide my disappointment to the room, as I’ve been feeling incredibly well considering how unwell I was. I was assuming that I’d have a very large amount of tumour shrinkage. On reflection I was expecting too much, and on reading the CT report I was reminded that I still have a lot of cancer. It does explain why I presented late, Therefore clearly I could sustain a lot of cancer in the areas it’s made home and feel fine.

This leaves me onto my last point. I disagree with the stages of grief DABDAand would like to add an F. An F for forgetance not really acceptance as I just can’t yet comprehend that I won’t be here, but there was times particularly even back then and in most of that April I managed to just forget about it. It’s been so deep rooted in my thoughts that I didn’t think that was possible. But I’ve had times now where these thoughts have vanished. Whilst playing squash a week before this, the first time since diagnosis a sport, I’m only decent at because of years of practice*, I know where the ball will go out of habit, I drift back to the T on autopilot. This normality was so distracting. Beating my grumpy welsh friend 7-0 on games, I was so tired I fell straight to sleep. Also there’s been times where I’m lost in the moment, for example, in Leicester having afternoon tea in Bradgate park after a short plod around it. Lastly this effect was most apparent during my fantastic holiday to Malta, which you’ll read much more about. Reading blogs about those on chemotherapy, particularly Dr. Kate Granger who’s blog is both better and much more thoroughly established than mine (https://drkategranger.wordpress.com/). You realise quite how rubbish it is. Chemotherapy that is… not my blog! Traditional chemotherapy to put it simply, attacks all fast growing tissues, therefore the blood gets affected, loss of white blood cells and red blood cells, leave patients prone to infection and anaemia. The bowel lining has a fast turnover so patients feel nauseated, patients have issues with infertility, and miserably to give them the classic cancer look, for some, their hair falls out. With that sort of treatment it must be much harder to simply forget it’s all happening to you. This gets me to the title, the SpR described me as an “oncologists dream” and for now I am… I’m symptom free, side effect free and treatment is working well. Long may that continue.

*Computer tomography, when explaining things to patients I tend to explain the words and then usually they understand the meaning. Tomography is the Greek for mapping and this is done by a computer. The patient goes into a donut shaped machine in which sends X-rays from all angles through the patient, this information (technically the impedance of the X-ray) is then interpreted to form a cross sectional image.

*LDH – lactate dehydrogenase, a crude marker of cancer activity in the body. It was 1234 on admission to Kingston it’s now been consistently normal.

*lacking the natural flare and technique of my biggest nemesis Miss Green. Who I only beat once throughout the whole of medical school.