Mark ended his account of his tremendous and inspiring battle against advanced malignant melanoma with his last optimistic Happy New Year post.

I now need to tell you the desperately sad news that Mark died on Thursday 19^th January 2017.  The last 16 days of his life were spent at The Royal Marsden Hospital where he received superb care.

On the 4^th January Mark was given the news that there was no more treatment that could stabilise his cancer.  When asked by one of his consultants if he would like to stay, he said confidently:

Why not? This is the best hospital in the world and I am your favourite patient. Why would I go anywhere else?

Mark always had the ability to draw people in and even in the last days of his life made a huge impact on everyone who met him for the first time having already had a profound effect on the melanoma team who have looked after him for 23 months. His closest friends came in to see him and between us all we made sure he never had time alone.

We as a family are in awe of Mark’s courage and selfless attitude until the very end when he was losing both sight and hearing. As a final example, Mark made a brave announcement on social media telling the world he was about to die and setting a target of raising £100,000 for Cancer Research UK. Within 24 hours the total rose from £73,000 to well over this figure and the fund is still rising.

I know he would want me to thank all of you; his friends, wider family and followers who have lived each minute of this with him.

Mark died in peace and dignity surrounded by love.

We, his family and Georgie are so grateful for the way the staff at the hospital enabled us to do something I never thought possible, to come away with beautiful memories of this final chapter of Mark’s life.

The blog will remain online. Mark worked hard in the last few months to write a book based on his blog entries and to also tell more of his story prior to February 2015. Please look in from time to time for updates. The book will be published by Poetry Space, my own company by the end of this year and I plan to do a great job for Mark. He wants the book to continue to enhance the message about cancer and melanoma in particular.

Sue Sims (Mark’s mum)

Georgie has asked for this message to be included here:

Watching my 28 year old fiancé cruelly robbed of his sight, hearing, swallowing, walking, speech, along with any chance of a future was heartbreaking and wrong. He still managed to be so caring of others around him, worrying that he had not replied to messages or that we would hurt our backs when we stretched his legs.

In his final hours he was surrounded by all of us, we held his hand and kissed him. He passed away and we sang his favourite songs to him with the music therapist and his guitar. These were songs that Mark had sung with the therapist when he was admitted to the Marsden in early January. Mark had requested ‘our song’, You and me by Lifehouse the song we would have had as our first dance to at our wedding. The music therapist learnt it and it was the last song we sang to Mark. This meant so much and I did not want to let go of his hand. We are devastated and it has not sunk in that I’ll never see him again.

Thank you so much for your messages, they mean the world to me and I am trying to reply to all of them.Mark really appreciated you all, and I am so proud of him and feel so privileged I got to spend the time with him that I did.We had amazing times and he would have had a beautiful future with a great career as a doctor. Cancer stole this from him. He was determined to raise as much awareness as possible to beat Melanoma (an aggressive form of skin cancer that affects too many young people) He has donated his body to research to help them find answers to beat this disease. He has written a book and he’ll continue to raise money for Cancer Research UK. I’ll never forget the memories and he will always be my hero.

Georgie

Happy New Year everyone. A year ago today I proposed to Georgie and just wanted to share these videos. It has been absolutely amazing and she has been the greatest support for me over the last year and beyond. We’re one of a few couples who have been engaged longer than they were going out and probably one of a few couples who got engaged on the Royal Marsden steps. Georgie gave up everything to be with me, she could have gone out with anyone, someone much easier, she’d already made her life tough giving up on her already successful career as a Speech and Language Therapist in London and switching to do a medical degree. Going out with me put a lot of stress on herself and her ambitions. I love you Georgie, I’ll never forget how much you’ve given me…because you’ve given me life. 

Below are two videos. The first I showed Georgie before proposing. My Dad sent me the second video about a week after the engagement. Enjoy.

https://www.dropbox.com/s/7z05xw2h0nuhuuh/Georgie%20video.mp4?dl=0

https://www.dropbox.com/s/mr9p7tgokhldh9j/Mark%20%26%20Georgie%20engagement.mp4?dl=0

I’m going to start this blog describing the events of the last week or so and then take you back over what has been a difficult two months. The last blog was quite optimistic, however things have not continued that way. On Saturday 26th November I went to my cousin Jenny’s wedding. I felt it was going to be difficult because just two days before I had considered going to Bath A&E due to how bad I felt. But I managed, with my family’s help, to control my symptoms of vomiting, restlessness, no sleep and a headache that was so relentless and severe; that I felt suicidal. Friday was ok, but Saturday was particularly cold and in the church I was tired, freezing and miserable. I felt out of place. This was supposed to be a happy day and I was very pleased Jenny was marrying her nice chap Dave. It took wearing three warm coats to finally make me feel a tiny bit warmer. Dad grabbed he and I a lift from a total stranger amongst the wedding guests, and I arrived at the reception feeling reasonably composed. Arnos Vale Cemetery has surprisingly become a popular wedding venue in Bristol and the meal was in a beautiful and grand chapel building. As the afternoon and evening progressed I got considerably worse despite self administering an arsenal of medication: morphine, paracetamol, ibuprofen and some anti-sickness tablets. Unfortunately due to the lack of toilet facilities in the building and having nowhere to run to when I had an urgent need to be sick after the starter, I found myself  unintentionally aiming my stomach contents on a gravestone. I felt humiliated and quickly explained to onlookers that it wasn’t alcohol, it was cancer.

 

I slept through the speeches, afterwards I spoke quickly to the happy couple and my cousin Ann, cried a lot and left in an Uber taxi with my mum. I had so wanted it to be a positive day yet it just got more and more of a struggle as the day went on. This was a shame as I know a lot of work went into creating a beautiful wedding. At home, I rang Georgie (she was unable to make the wedding), sobbed a lot, then went to bed. Mum piled on a duvet and blankets and put an electric blanket beneath me but my teeth were literally chattering with the cold.  I must have slept about an hour before spending the rest of the night very restless, with severe vomiting, headaches, neck pain and right sided abdominal pain. Mum and Dave looked after me in the night, making me sip water, and in Dave’s case making himself up a makeshift bed on the floor beside me for the last few gruelling hours and putting compresses on my head. At seven in the morning Mum dialled 999. The paramedics were great. With a fentanyl patch already on it still took around 40 mg of morphine (half IV and half orally), IV Paracetamol, Ondansetron and Ibuprofen to get my symptoms under control and I was high… very high.  That was probably the pinnacle of this episode but most of the days before and after this have been very bad. Just a couple of days earlier I had to stop playing pool with Jack and Kieran because my head was so ferociously hurting. How has my quality of life capitulated? In other words why has it gone so Pete Tong?… Wrong?

 

24th October

Going back to October it started in a little known tube called my right ureter. Urine flows down these from each of the kidneys into the bladder and out of the more well known urethra; definitely a part of the human anatomy that I hadn’t given much thought to before. On Monday 24th October, I had woken up in quite a bad way. I was feeling rather well having been to the Body Balance class at the gym the night before. After the class Dad, Paul and I played a new board game, Tzolk’in The Mayan Calendar; a somewhat complicated game but thoroughly engrossing. I went to bed feeling pretty well still unaware of what was to follow. In the morning at about 8am abdominal pain started and a few minutes later I vomited a lot. (This is a pattern that has continued with the urge to vomit coming on really quickly and usually a few full vomits being followed by excessive amount of retching). I had some breakfast an hour after being sick and hoped it would stay down. I took my Prednisolone afterwards and it came straight back up. Now for most people not keeping tablets down for one day wouldn’t be a problem, depending on the tablet and their own condition. However with steroids this can be a disaster, especially as I know from recent tests that my adrenal glands are not yet ready to start making enough cortisol to counter this. This state of affairs has been brought about by my prolonged period on a high dose of steroids. Without corticosteroids the body goes into a state called an “Addisonian Crisis” basically due to the lack of cortisol and cannot maintain a blood pressure and eventually organ by organ will fail. Being a doctor I was very aware of this problem so we got into the car and headed to Bath Hospital, with Dad driving and Mum in the back seat. I had gone home to my parents for a few days. They have a Bristol postcode but Bath is their nearest hospital, about twenty five minutes drive away. On the way Dad stopped the car for me to be sick. On arrival I explained the situation and we went straight through to a bed space in majors. I wasn’t in a critical position but I knew I would be unless I got some steroids in the next half day or so…

 

After receiving the intravenous steroids (100mg Hydrocortisone) which perked me up quickly and having had blood tests coming back normal I was discharged. The next day Paul, Mum and I went to Cardiff. Dad was working in Barry and dropped us on the way. We went to the Doctor Who experience, which started with a little interactive adventure. We had to find these crystals on different sets, a few less shy children got their chance to shine and take the crystals from the Daleks. Unfortunately adults were discriminated against so I missed my chance to save the universe! Surely I’ll get the award for that someday. The museum was an entertaining hour and a half, finishing with a walk through different sets and countless monster costumes.

 

Georgie rang while I was outside and I told her what a brilliant day we were having and just then I noticed a bike hire place, where you could hire cycle golf buggies. We felt energetic and just about got the very heavy contraption moving down the side of Cardiff Bay. After that we had food in Wagamamas, followed by the cinema to watch the film Inferno (the film inspired by the book of the same name by Dan Brown). That night I went to bed feeling content; only to be woken up about midnight with severe right sided abdominal pain. Despite Ibuprofen and putting on some Fentanyl (morphine like) patches, as I didn’t have any Oramorph I could not get the pain under control. I had got to the point where I started to feel so confident about my health I stopped carrying Oramorph on me. However, I knew at this moment that I’d let my guard down, and in this horrific game you can’t ever forget.

 

That night was horrendous, I just couldn’t calm the pain down enough to sleep. I saw on What’s App that Georgie had just been awake at 4am so I rang her. It helped to organise my thoughts, calm me down, and put a fentanyl patch on. We told each other how much we loved each other, then I woke my parents up, via the toilet to vomit. This resulted in my holding a hot water bottle next to my pain and being read a bedtime story by Mum. I fell asleep but I still woke up with the pain. After vomiting again and a bit of umming and ahhing, we called an ambulance. A good call as the two guys that arrived were very good and got to the crux of the matter quickly; I needed pain relief. Morphine was pushed into my veins, life got much better and we went back to Bath A&E for the second time in three days. They rang the Marsden and the plan was for Bath to admit me for pain control, to administer steroids and get an urgent CT scan. I had a lot more morphine that day; giving me a warm bath of hope in my mind.

 

I was so tired I drifted off despite the noisy medical admissions unit, the snoring guy across the bay and the near constant beeping sounds from around the ward. I must have woken up about ten times drifting off and dreaming vivid opioid dreams over and over again. A young Senior House Officer came at 6.10 am. I repeat 6.10am. Very, very early. She had two pieces of paper in her hand, despite being bleary eyed the paper looked like the CT scan report. She proceeded to go through the findings, pointing out there seemed to be a new site of metastasis, my right ureter, whilst also reassuring me that my renal function was okay, therefore clearly still draining enough urine. However in hindsight I thought peeing had perhaps got a little more difficult to initiate and was slightly painful. I’m not quite sure that she did the right thing in giving me bad news, of a new tumour when everything had been stable, at a crazily early hour. I have to admit she was very thorough, but because she was so early, I had assumed that the news was going to be good and therefore it came as a shock. Who gives bad news after waking someone up? Surely not great practise. It was too early to contact anyone and I was left totally alone with terrifying news. I wouldn’t recommend it. Please doctors, wait until 9am and give the patient an option to have someone there with them. This SHO was lucky that I am better able to cope than most patients and do prefer to know as much as possible as soon as possible, but I still would not advise it. I then couldn’t get back to sleep.

 

I managed to get hold of Mum out of everyone I phoned. She knew it was bad or I wouldn’t have called right then. Later she came to the hospital with Dave, Paul and Dad, delayed a little bit as she felt it was better Dave and Paul had some sleep for what was going to be a long day. Dave was already in Bristol from the day before with compassionate leave as he’d had some intuition that bad news was on its way. Georgie and I had a chat at about 8am before the others arrived. I hadn’t cried until then and I blubbed and blubbed. She cried probably even more than me. We’d had such a great few months and this seemed to signal the end of it. Chaos had seemed to be ending, but now it was back. In truth it was never that far away.

 

Knowing the diagnosis early was useful. I asked the doctor to prescribe “Diclofenac PR” a drug stronger than Ibuprofen which works particularly well up the rectum. My rationale was that it is particularly good for the pain associated with renal stones and therefore might work for this.  After taking it regularly I did not need to have extra morphine other than the Fentanyl patches that I’d already put on. By the time the family got there I was actually feeling quite well, pain free and in the mood for a game of Camel Up (in fact several) which lasted most of the day. There were of course some emotional moments about the gravity of the situation. I was discharged that day awaiting a plan from the Marsden. Due to scans not being able to be sent electronically to the Marsden, somehow we’d negotiated taking a CD of the images of the scans from Bath home with us. Thanks to Paul and Dave for helping me work through this process and a helpful person in radiology.

 

I got home and wanted to see the scan. It was eerie, I was actually so intrigued that emotionally it didn’t affect me. However Dave, and Georgie (who saw the scans over Facetime) found the whole thing more troubling. As interesting as they were; the harsh reality was that they hated the fact that it was my body, Georgie saying ‘I wish this wasn’t of you’. We spent quite a bit of the evening trying to find the ureteric tumour, taking advice from Georgie who’d just done Special Study module in Radiology. Eventually we found what they described in the report.

 

1st November

On the 1st November everything became a bit clearer. There was a mad panic after discharge from Bath to organise immunotherapy as fast as possible if that was necessary. Lavinia (my registrar) who was about to go on maternity leave, pulled out all the stops and I had it lined up for Wednesday the following week. On Tuesday I had an MRI of my head to check for any progression there, (thankfully there was not) and a urine sample to look for cancer cells. I saw Dr. Larkin in clinic; the rarity of my case was exceptionally interesting to him. He explained, as I expected; (after Mum found a case study of an Australian patient), that this was an exceptionally rare event. He and the Prof who have about seventy years of experience between them, had never seen melanoma spread to the ureter. He went to speak to their urologist who looked at the images and felt it could be either a benign tumour,  a new primary cancer (transitional cell carcinoma) or a melanoma. Edward, the new specialist registrar, who was taking over my case from Lavinia did a remarkable job and organised a urology outpatient appointment very quickly.

 

After the melanoma appointment I went back to Bristol for a few days. By Thursday at noon we still hadn’t got a time for the urology appointment, which was going to be at Chelsea and Westminster Hospital. I was starting to get a bit disappointed, so Dad organised going to the theatre that night. They phoned just forty minutes later, Mum and Dad had gone to Aldi. “Er, Is that Dr Sims?” “Yeah” “I’m not sure you’re aware but you have an appointment with Mr Attar at 15.30 today”… obviously I wasn’t going to turn down the appointment. Despite the appointment being over 100 miles away in just a few hours. Mum and Dad arrived back whilst I still was on the phone and I shouted we had to leave now. Mum and I both grabbed our bags and raced to get there, with Dad dropping us at the station in Keynsham, changing at Bath for London Paddington and thanks to Uber for the final leg, we actually arrived twenty minutes early.

 

The consultant Mr Attar was efficient and had a kind attitude. After the consultation he was desperate to fit me in on his surgical list as quickly as possible. He went to pre operative assessment himself to get me seen and added me to his Monday surgical list. (Remember this is Thursday now) He explained that as he was overbooked and as I had extensive cancer it might not turn out as planned. For example there may be a paucity of time or the anaesthetist could potentially have a problem anaesthetising me.

 

I felt exhausted by the consultation and the events of the previous two weeks. I was so well and yet the stability was over. I discussed it with Mum, Dad and Georgie, as there was some suggestion that it might not be melanoma, that was good news right? But I still needed a reasonable sized operation. By that I mean somewhere between the expressions ‘minor op, and a ‘major operation’. This op involved insertion of a plastic stent (a JJ stent) from the kidney to the bladder and hopefully if the ureter doesn’t spasm, remove as much of the tumour as possible. All under a general anaesthetic. However I couldn’t help thinking if this was a normal person they’d be devastated by the mere mention of an operation. I phoned Georgie whilst having dinner with my mum. Talking to Georgie always reminds me how much my survival means, we cried a lot, Mum booked a hotel and we stayed overnight, neither of us feeling like going far. The next day the results of the urine sample came back suggestive of malignancy but, admittedly, inconclusive. Was this the end of the miracle?

 

We didn’t need to wait long to find out for certain. Two days after the operation I started getting headaches again, along with occasional vomiting and neck stiffness. As I had very recently had an MRI head I waited a few days just to be sure that I thought something was going on. The headaches were particularly severe after waking up in the morning. By Saturday (12th) I had decided that I needed to been seen ASAP. So I went from Georgie’s in Leicester to London on the Sunday, with Dave and Paul picking me up by car. Then emailed Nikki at 8am the next day to be top of her email list. She readily replied and Mum and I met to get an Uber to the Marsden.

 

The Marsden was an efficient machine and by 11 am I had had a range of blood tests and crucially an MRI of my head (another patient hadn’t turned up). Fortunately the Acute Oncology team seemed to have toned down their “Grim-Reaper” attitude and didn’t mention a Do Not Attempt CPR order or any talk of withdrawing treatment. Instead they were very surprised by how well I was, just under a year on from when I was incredibly unwell. But at around 3pm I heard them uttering my name on the nurses station. Albeit I couldn’t really make out what they were saying but the length of discussion implied it was bad. It was. I already knew I had melanoma lesions in my meninges (the lining of the brain and spinal cord) and two of them were growing. Awaiting for the biopsy result of the ureteric tumour seemed unnecessary now. Restarting immunotherapy was almost guaranteed.

 

18th November

On Friday 18th I went to the Marsden with Mum. The day had been set up for immunotherapy. Nivolumab and Ipilimumab, the combination of drugs that had been stopped due to my hepatitis (liver inflammation). I saw Edward and Nikki in clinic. It wasn’t much of a consultation but more of a chat and thoughts. The only medical benefit of the appointment was to find out definitely that the ureteric tumour was a melanoma (which was obvious by then because Mr Attar told me the tumour was black), a discussion of potential further radiotherapy, which was unlikely and to get a prescription. Other than that it was a motivational talk. We all knew this, and I used the term “shit or bust”. Nikki mentioned how much better I was than before starting immunotherapy last time and that my steroid dose was lower and my liver function was back to normal… I suggested a reduced dose of the two drugs and was told that wasn’t possible and even if it was, it would be ill advised as the current dose is the best tested. He went further, albeit not repeating my crass language, he felt it was either do it properly or not at all. I understood I needed a quick response, so full steam ahead but I have never been so terrified. This was a conscious decision to potentially kill me or have hideous side effects with a small chance that my disease might be controlled again. All these thoughts stemmed from the limited experience that the team had. I’m a guinea pig and I know it. The Prof came in afterwards to wish me ‘good luck young chap’ and to say ‘we are all rooting for you’. I thanked him warmly and Nikki too on behalf of all of us. Whatever happens we will be very grateful that they had given me time and more importantly a lot of very precious quality time to enjoy life with Georgie, my family and my friends.

 

As the cancer was growing… it was now or never. It was a journey into the unknown and as I watched the first drips of Nivolumab enter my veins that afternoon; I knew only one thing I was terrified.

 

The following weekend was mostly undramatic Georgie and I went to Winter Wonderland after having a short cycle ride through Regent’s Park. The next day going to The Wellcome Trust for its exhibit on “Bedlam”, apt because our lives were chaos once more. I went to see my brother Matt and spent the rest of the week in Bristol leading up to the wedding.

 

Back to now as described at the beginning of the blog. Every day the headache and the symptoms are getting worse, which has led me to feeling as I am now.

I don’t really play computer games anymore, however as a teenager I did quite frequently. The geeky phrase to say when you successfully beat another person online is “owned”. It’s saying that you are so much better than that person that you literally possess them. The only game where I’ve played enough and practised enough to really “own” someone was Command and Conquer Tiberium Sun. Playing it most nights when I was 12, mostly online as long as the connection held out (good old dial up). I got to the point of being so good at it that I would be accused of cheating after my disrupters had very quickly landed next to an opponent’s construction yard. But to get to that game winning point so quickly there were many things you had to do as fast as possible, and many tasks simultaneously. Everything was well thought out, every small gain sought after and achieved. 

So how is this relevant?
A computer game is a reasonably pointless thing to succeed at. But lots of things in life require you to focus on those small margins which improve the outcome. Take the British Olympic Cycling Team, a team at this year’s olympics in which every single person won a medal. It got to the point where as a spectator you still cheer, but you expect victory. What makes them so much better than the other teams? It is because they’ve focussed on every little margin. Every marginal gain they can think of they have done, I’ll give you some examples:

• They had their facilities reviewed by a sleep expert the consequence of this was that on average they sleep 40 minutes more a night. 
• They’re all taught good hand washing techniques to prevent the spread of infection.
• They’ve all seen a sports psychiatrist to work on their individual “thoughts of failure”. 
• After events and training they wear heated hot pants to prevent their muscles seizing up afterwards.
• They also record all sorts of data from the bike so they can thoroughly assess each cyclist. This is formulated into a ‘power curve’ for them to aspire to. 

All this leads to more effective training and a culture of success. Giving that little bit extra, each little bit added together to give an increased chance of success. 

I don’t know why I am still alive, but my cancer nurse specialist, told me recently that the team are very impressed at how well I am doing at the moment. However she went on to say “we had quite a few young men on our list who were really ill about the same time as you at the beginning of the year and… that they’re all not here anymore.”  I took this as motivation. It strengthened my resolve to keep focussed and to keep going. No one wants to be defined by their cancer but for someone like me who had an exceptionally large amount of cancer and the most ruthless one at that, lifestyle sacrifices were necessary. Giving up meat and alcohol, taking Bifidobacterium pills, exercising, eating less and taking vitamin D and calcium supplements. Furthermore I’ve ended up under the best melanoma team in the world, fallen in love, I have an exceptionally supportive family, and I’m on the Melanoma Mates Facebook page. As the team have seen the most melanoma patients they’ve in effect got the most data either from trial or some anecdotal, but when treatment is so new you need that anecdotal experience. Despite having had countless appointments, I’ve only gone alone twice and these were both recently when they all know I am fitter and able to manage. Loneliness is a huge cause of stress, and thanks to Georgie, my family and friends I’m definitely not that. What better way to supercharge your immune system? Lastly the Melanoma Mates Facebook page is full of success stories (and lots of awful ones too) but it shows that it is possible despite it being very hard, that success is contagious and increases collective positivity. What you don’t need is any negativity in your life. 

I’ll clarify the loneliness point, what I’m referring to is the “Roseto Effect” named after the town in Pennsylvania after a cardiologist who moved there in the early sixties. He noticed he was not very busy. He worked out that the rate of heart disease was half of the American average by looking back at old records. A large study team came to the town  to find out why. They found that they were actually more unhealthy in terms of higher rates of smoking (typically cigars), obesity and sedentary lifestyle. They compared the results from two other nearby towns too. As it was largely an Italian community, they thought it could be the Italian diet but no, they ate more fried food than the other towns. They whittled it down to just one factor being the most important, people in Roseto weren’t lonely, they lived in multi-generation homes and had a great sense of community. This was confirmed as time went on and the town became more “American” i.e. More single parent homes, the younger generation moving to big cities… the town subsequently got more unhealthy and it took until 1971 before the first Rosetan below the age of 45 died of a heart attack. 

There are things I could be better at such as having a more stable routine and sleeping better. I accept that some of these margins I’ve done lack real clinical data, so as a caution check with your doctor first, but there must be a reason why I’m still here. I’m not just stage 4 I’m stage 4+++. There are very good reasons why my case been presented at two conferences and is being submitted to a very prestigious medical journal. That reason is that I am currently achieving the impossible. My case has literally broken all the rules. My ongoing survival could be for a simple reason; Ipilimumab. Somehow I’ve had success despite my immune system being decimated by high dose steroids and mycophenolate mofetil, both immunosuppressants. Moreover my tumours have not grown anymore despite not having had any active cancer treatment since April. Immunotherapy works by unmasking the cancer from the immune system so it can recognise it and attack. Theoretically this shouldn’t have happened due to the large amount of immunosuppression. I repeat, this was scientifically very unlikely. I feel that the lifestyle changes have given me these small marginal gains and have helped me to achieve and maintain stability. This is confidence boosting. I can feel that I did something to achieve that… I’ve taken ownership. Instead of being defined by my disease I’m defining it. I feel in charge. Obviously I know that this could all change overnight and melanoma could ruin life again.

It’s too easy to be defined by your disease, I’m a cancer patient therefore I am. I don’t buy that. If you are a patient please make an extra effort to understand that your enemy, this disease (whatever it is) is just an opponent and therefore there must be ways you can more effectively manage the disease. A good insight into disease I admit is easier for me, being a doctor, but it is vital for everyone. For example when I had manic episodes on steroids at the start of the year the insights Georgie and I had into what was happening made them less scary. The best example of this is someone with chronic pain (please see on IPlayer “The Doctor Who Gave Up Drugs” as an example of this). A lot of people suffer from daily pain every day and despite many investigations and specialist input no cause is found. This pain is completely debilitating. What’s happened though is they’ve let the pain define them. Many patients get obsessed with wanting a diagnosis and the pills they take. Yet taking pills and being heavily investigated reinforces the feeling that they are sick. What they actually need to do is learn about their disease, have the insight to accept there is nothing that needs fixing and that it is an awful self fulfilling cycle. For example, your shoulder hurts so you stop moving it, it becomes stiff, so you move it less, you overuse the other arm and then that gets sore… Eventually everything is in pain and that’s all you can focus on. What needs to be done is to be less medicalised, take your disease by the scruff of neck and really own it. Move through the pain, understand that by moving you are not causing any damage, just pain, and be determined to carry on. When you realise you are a month down the line and you are taking less pain killers than ever, that’s an outcome you’ve achieved. In effect you’ve taken ownership of your disease and you’ve stopped being a slave to it. I hope you agree what I’m doing is not “cheating death”. Like the computer game Tiberium Sun, there is no “cheats”, my opponent has fought me to the brink, but I’m owning it, for now.

A couple of additional points

1. Georgie and I watched the next episode of Grey’s anatomy, series 6 episode 1. It turns out Izzy actually survived her melanoma despite going into cardiac arrest (the heart stopping). An entirely implausible outcome… but that’s Hollywood. 
2. Shout out to Sandeep. 

Georgie and I had been waiting a long time for this. Her holiday. Four weeks away from Leicester Medical School for her and hopefully a bit of time away from the Marsden for me. It seemed to be set up for us. My ALT (liver enzyme) was finally falling again. The bloods were repeated on Thursday 28th July and the trend continued. From the Marsden, Mum and I went for lunch and I went on to meet Georgie for a day out in Oxford. We started with some Chinese food and then a punt. We were punted (is that even a verb?) by a sixth form student. Later Georgie had her nails done; a big deal because she’s not allowed during placement. This was the perfect chance to do it.

 

From there our road trip continued to Marsh Baldon, to see Matt (my brother) and his girlfriend Alexia in their new house, for the first time, along with their cat Tom. I’d pre warned Georgie that he might be out and about, (she’s obsessed with cats), but fortunately he made some time for us during his busy schedule scaring birds and chasing rodents. Marsh Baldon is very English. The local pub where we went for a drink even had Morris Dancers and the village itself has the largest village green in Europe. It is verging on too big to the point where it almost looks like a field. Alexia cooked us all a great vegetarian lasagne and we finished the night playing bananagrams, a board game I describe as “Scrabble on acid”.

 

The next day we headed to Donnington Valley Spa Hotel, a very splendid place indeed and we got their Friday night deal. The leisure facilities were modern and the massage was good. The food was excellent and our stay ended with a pretty decent breakfast. After that we headed to Bristol to celebrate my mum’s 57th birthday at the Harvester. During the meal I was surprised to see Dave, Paul and Dad sweating around the table. They had all made the same mistake with the salad bar and put the extra hot sauce on their salad (which was meant for the chicken). Being male they insisted on carrying on despite their obvious discomfort.

 

In the evening we had an engagement party to attend for my old friend Olly who is marrying Kirsty. It was a brilliant evening, again a chance to see and catch up with old friends, reinforcing for me how glad I feel to have lived until wedding season. On the Sunday we headed down to Devon to see Tim and Roisin (my friends from medical school). Tim’s parents have a very amazing converted old farm and barn on the edge of Dartmoor. So old in fact it’s listed in the Domesday Book (1086). They literally reap what they sow and grow a lot of plants and look after animals including a large number of chickens living in Fort Chicken. When we arrived we walked around the grounds, petted the pigs Mabel and Brenda and spent the rest of the early evening in the fire heated hot tub and ended with a lovely meal. The next day the weather had changed and it was raining a lot, (a firm reminder of trudging through the rain on one of the many hikes I have done across Dartmoor, either for training or for the ‘Ten Tors Challenge’), so we all went to the Princetown Prison Museum. It’s a bleak place. The 200 year old Prison is right in the middle of the moor with it’s unpredictable rain and relentless fog. There was a very old video (90’s) of former prisoners. Having been on TV quite a bit now, I’ve started to get more into analysing video footage particularly documentaries, because Georgie and I watch loads of them. Apart from the footage looking obviously dated, it weirdly zoomed in on various body parts to hide the identity of the prisoners, however it chose things like hands on crotch and their left shoulders. Afterwards I filmed Georgie’s impression of this. After that we went to Tavistock to see the market and later on for a pub quiz. We came overwhelmingly last, as it was intended for an older age group, and all of us being medics means our knowledge is quite focused and we only excelled in the Science and Nature round.

 

Tuesday was our last day in Devon and I needed to have some blood tests to keep up the monitoring of my liver. This I felt would be a difficult task. However thankfully, Roisin had worked in Derriford A&E over the last year, and knew the people to talk to. She found someone willing to check the test, whisked me into the department and actually took my blood herself. I am very grateful to her and Tim who, after this detour, headed to North Wales to start their new jobs. Wednesday 3rd August, was the big doctor change over day. Georgie and I headed along the south coast stopping in Bournemouth, where we did the zip wire down from the pier to the sea. Then in the afternoon we cycled ten miles along the coast. The first five miles were very pleasant, and it felt like a very romantic date with the prevailing wind pushing us comfortably along. The second 5 miles i.e, the way back, was quite an endurance event and was the complete opposite. Overnight, we stayed in the Wessex Hotel which was rather tired and in need of refurbishment. On Thursday Georgie drove us back to London, stopping in the New Forest and Winchester on the way. The first stop was at Furzey Gardens “A haven of peace and tranquility in the heart of the New Forest”. It lived up to its name and we had to avoid the kids looking around for fairies. Georgie tried to make friends with the resident feline, it seemed to be enjoying it at first but quickly it became unrequited love. I’d heard good things about Winchester and I was suitably impressed. It’s lovely, full of medieval style architecture and decent cafes. We went to a very trendy vegetarian only cafe and had a stroll around.

 

Friday was a particularly great day. I had scans to go to. I met up with Dave prior to meeting up with Georgie (she’d gone to see her Dad who was recovering from a spinal operation). We met up afterwards, (having been told by email provisionally that the scans showed stable disease), I was ecstatic. Due to an ongoing cold, with each cough my scanxiety had built and therefore I was very pleased and relieved by this news. We went to eat at a Thai place, Rosa’s in Victoria which I’d highly recommend then cycled along the river. The next day we visited Kevin (Georgie’s Dad) again along with her Mum, Gillian. We arrived at 2pm to find he hadn’t been out of bed yet. After sorting him out a bit and helping him get up Georgie and I went to meet Vikki and Craig for a day out. We tried to go to a mini golf place called Swingers but it was full. Instead we cycled with our favourite former mayor nicknamed bikes to Shoreditch for food and to play table tennis at Bounce, a ping pong bar chain. It was girls vs boys and the competition was high. We ended at a diplomatic 2-2 on games then headed to free comedy in the Camden Head by Angel. It’s a good cheap night out and one I’d highly recommend. The comedy is usually very good, with the occasional act being a bit ropey especially if they’re a comedian just starting out. It started a few years ago just on a Thursday night, now it runs every night of the week. Also they have now bought a pub down the road from their normal home of the Camden Head, and just by chance they were using it on that Saturday to test it out before it formally opens in October. Fortunate, as we were too late to get a seat in its traditional venue round the corner.

 

The next day we arranged to meet Dave and Alice in the Four Thieves Pub in Clapham Junction. We had booked an Escape Room experience called Lady Chastity Reserve, this being my second and Georgie’s first. They are good fun and it’s an hour to get really engrossed in something as a team. You get locked in a room and you have to follow clues to get out in one hour. The storyline was intriguing and suitably difficult, albeit more clues would have been helpful as we were very close to completing it when the hour was up. The event was also mostly in the dark which got frustrating and having to find clues by torchlight added (I thought) an unnecessary layer of difficulty. The pub itself was a playground complete with a small mini golf course, table tennis tables, a remote controlled car race track etc. After getting a roast, (well it was Sunday), we headed to the race track, and by then Dave and Alice’s friends had arrived. Georgie guaranteed starting first by an exceptional bit of stupidity. She told the lady that she couldn’t do it because there were lamps in the way of the screen (just a scoreboard) . She responded “but you don’t really need that” followed by Georgie saying “I can’t see the track”. She actually said “that’s the stupidest thing I’ve ever heard” then pointed to the big track and Georgie’s remote control car below and in front which she hadn’t even noticed. This conversation bore fruit though, because she was insistent that Georgie needed a helping hand and put her first. Overall she finished third and I a woeful seventh.

 

The next day we went to the Churchill War Rooms. It’s next to Downing Street and Georgie and I cycled there. It was good, although it had far too much information, requiring at least two visits to get it all in. However you quickly get a good feel of what Churchill was all about. We then went to a pub quiz in Leytonstone with Matt, Rachel, and Siobhan. Georgie and Matt collectively came up with a great Olympic themed drinking game which was thoroughly judged and gave us nine bonus points.

 

The following day we had clinic to attend to. Georgie, Dave, Mum and Dad came along with me. Prof. Gore and my Clinical Nurse Specialist Nikki were in good spirits. He started by asking me if I knew the results of the scans. Fortunately I did, otherwise his presence would have frightened me. In medicine you quickly realise that you mostly only see the boss when things are going wrong. This time it was good news (things were stable) and we discussed the plan for the next few weeks. A decision was made to reduce the steroids, to only monitor the liver enzymes and hopefully at some point to restart some combination therapy. An appointment was made to see them again a week later. We all celebrated with a meal at ASK restaurant. Alice joined us for this. The next day Olly and Kirsty came to see us in London, I met them at Victoria Station as I finished breakfast with my parents there only half an hour earlier. We spontaneously decided on a musical called Exposure. Georgie caught us up and the four of us watched it. All of us agreed that it wasn’t great; the plot was confused particularly in the second half, but it was entertaining and good value for money. From there we went to mini golf in Putney, conveniently located near the pub quiz we were going to later. Olly won and was particularly good, Georgie came second as I was expecting, she has a natural flare for sport and always beats me at mini golf, and Kirsty came last. The quiz was at the Queen Adelaide pub. It was the first time Georgie and I had been since her bout of sepsis (the day after her last visit). We came fifth and Dave and Alice turned up halfway through. I quickly caught up with the quiz master Tom who I’ve got to know a bit over the years, if their was a competition for the best pub quiz host, Tom would be hard to beat.

 

The morning after we headed down to the South Coast, stopping at Petersfield for a Thai meal and then on to Chichester, which is a truly fantastic place. It’s kind of got it all, an attractive section of canal, a city wall to walk around, a couple of museums, a bit of tourism and a university to keep it trendy. As well as this, it has a fancy high street, it’s near the sea and the South Downs. We had a walk around the walls, and stayed in the Premier Inn near the cathedral. The next day we visited Chichester Harbour which was a struggle to find, due to a lot of expensive properties blocking access to the sea. However the part we did see, was probably one of the most beautiful places I’ve been to. Georgie’s flip flop broke, it was going to be hard for her to walk back, until I suggested tying my sock around it, with that she had the epiphany of putting the sock over the top. With sandal secure we walked back to the car. We then stopped at the Crown and Anchor pub for a late lunch, before meeting up with everyone else at the house in West Wittering. Abby and Tom were there when we arrived along with their baby Florence who was just about eleven months old. I would like to have a kid at some point but I know it’s completely impractical at the moment. It doesn’t help that Florence is a lovely little girl. We cooked fajitas and played Mafia. A lovely time at the beach and a round of crazy golf the next day was followed by a very competitive game of flip cup. Later on that evening we went to the beach and stared up into the night sky watching shooting stars. As the meteorites broke up in the upper atmosphere the whole night felt particularly magical. The weekend was finished off with another pub meal at the Crown and Anchor which overlooks Chichester harbour, so is justifiably expensive. After West Wittering we headed to Kent, to stay with Georgie’s parents. I’m pleased to say that Kevin was significantly better than a week before when I saw him post his spinal operation. A day later I headed to London for Pentamidine (the drug that if you remember went all over me the first time I had it), and a clinic appointment on Tuesday. Between these I played four matches of Squash against Dave and two of his friends. I beat Dave and Diaga.

 

Appointments over, I returned to Kent to celebrate, mostly Gillian’s (Georgie’s mum) birthday though we also noted my eighteen months of survival from diagnosis of stage 4 cancer. We went to an excellent restaurant in Royal Tunbridge Wells for a three course meal and a walk along the Pantiles, a great high street which has live Jazz every Thursday evening throughout the summer. I headed to Bristol the next day for the funeral of Andrew Manning, my friend James’ Dad. He made James’ wedding which was great but lung cancer took his life only a few weeks later. It was very poignant for me going to this. I could not help thinking ‘the next time I’m here in Westerleigh Crematorium better not be in a box’. The ceremony was moving, more religious than I expected, James did a very good speech and somehow kept it together.

 

On the way from Kent to London we stopped at Vikki and Craig’s flat, we got a takeaway and played “The Humming Game”, where you had to hum various famous songs. Having the musical talent similar to the the most delusional X Factor competitor you can think of, I was suitably bad. My mixture of humming and seal laughing left me woefully last but nonetheless very entertaining.

 

The following days found us back at the same pub quiz with Matt (Snowshill) and Layla, and also included a trip to Fulham Palace. At Fulham Palace, it was my turn to be the stupid one, whilst in the building, specifically the Fulham Palace museum, I asked Georgie where the palace was… not aware that I was in fact, inside it. Fulham Palace has very attractive grounds, it was an ideal place to hang out and it was a good cycle along the river for us, however the palace itself, as even the museum video points out, is not particularly impressive or grandiose. Hence why I didn’t realise I had walked into it.

 

We finished Georgie’s summer in style, with a trip to Center Parcs in Woburn Forest which is near Milton Keynes. It is very new, only two years old. This has the benefit of it being smaller, everything looking clean and new, and everything working. We had a room in the hotel with a kitchenette and self-catered all weekend. Along with having a lot of fun, I wanted to maintain the diet and exercise. The water slides there are the best I’ve been to in this country. The Twister literally did just that and had me turning on my face a couple of times, much to Georgie’s amusement when I got out at the bottom. The Tornado has a very large drop and the experience was made complete with Georgie doing a good impression of the shocked emoticon on the other side of the rubber raft to me.

 

We also started watching Grey’s Anatomy from where Georgie had left it years ago. This was at the end of series 5 and the episodes were from 2009. I wouldn’t usually tell you the precise year of a TV series, but in this case it’s important. Bizarrely, in the episode we began with, one of the main characters (Izzy) had just been diagnosed with stage four metastatic melanoma with tumours in the brain. Her brain tumour was symptomatic and giving her hallucinations. As Izzy is a young doctor with my diagnosis obviously it hit home. The difference however is that she was in America, where cancer treatment is notoriously aggressive (for dubious gain) and it was 2009. 2009 doesn’t seem that long ago, but shows the progress that has been made. Hopefully I can say this without seeming callous but part of me wanted her to die. I’ll explain. Early in the story arc she was told there was a five percent chance of survival, which was probably inaccurately high. She received extensive surgery, traditional chemotherapy (Dacarbazine) and interleukin-2. I was anticipating that she would survive, because it was for TV and if you judge the medical authenticity of Grey’s Anatomy’s by the quality of the actors’ chest compressions then it would be woefully inaccurate. The chest compressions really are terrible. However she did die after having a lot of unnecessary surgery, including taking out her hippocampus, the area of brain responsible for memory. So she had a few days longer alive but some of those days she had awful short term memory loss to the point where she kept repeating conversations. What is life if you cannot remember it? As the whole series is about surgeons Izzy elected to have the surgery after some debate with most of the characters, and her oncologist who didn’t want her to have the surgery but wanted her to wait for the IL-2 to work, like one of her ‘miracle patients’ that Izzy had got to know. The miracle patient actually died, as did Izzy. As sad as it was I wanted Izzy to die as that was a very much more likely outcome. Prior to Ipilimumab, IL-2 was used to manipulate the immune system to attack the cancer again. It worked well in a very small number of patients, and gave many patients a lot of side effects. I didn’t want the story to give patients false hope. It does however show how far cancer treatment has come in such a short space of time. It is also a reminder how futile persistent surgery is, fraught with potential side effects. Primarily it’s a waste of time, therefore I would recommend that most patients only go down this route after a very thorough discussion with their oncologists. We packed up the room at Center Parcs on bank holiday Monday, and headed to Leicester. I got the train to London in the evening. Neither of us were wanting the summer to end. But I had a 9am blood test to attend to the next day at the Marsden and Georgie was starting term . As I was walking from St. Pancras station to Dave and Alice’s flat, I thought to myself after months and months and a very difficult 2016, here I am very happy, and I feel 95 percent. Not bad considering I was at 1 percent at the end of 2015. Not bad at all.

The time has come for a big update, because today it has been 18 months since I was diagnosed with stage 4 malignant melanoma on February 18th last year. The journey has been incredibly difficult, but I have now arrived at the point which Prof. Gore anticipated at the beginning would be my optimistic prognosis. The pessimistic prognosis of four months would have been applicable if the first drug, Dabrafenib had not been effective. So where am I now? What will happen next? These are major questions. Treatment is now very bespoke. I’m probably the only patient, or one of the very few, that have had the same treatment pattern of Dabrafenib then Pembrolizumab (five doses) plus whole brain radiotherapy and this was followed by the combination of Nivolumab and Ipilimumab, which I’ve received twice and not been able to have more of due to an immunotherapy induced hepatitis (liver inflammation) presumably caused by the two drugs (most likely Ipilimumab). The effectiveness of the immunotherapy was expected to be reduced due to the large amount of steroids I have been given (recently Prednisolone switched from Dexamethasone) and mycophenolate which both suppress the immune system. But somehow it appears to be working for now. The combination of whole brain radiotherapy and Pembrolizumab seemed to stabilise the many lesions in the brain. However the liver metastases were growing hence the switch to Nivolumab and Ipilimumab. This was successful and I’ve had some shrinkage in most areas and the liver lesions are stable. This has continued now for five months with the latest scans on the 9th of August confirming no shrinkage, but stability. Without being too hyperbolic this is a modern day miracle… I came to life 28 years ago and now I am cheating death, but steroids have well and truly left their mark on me. I feel it’s a 1 all draw, me vs melanoma, it’s gone into extra time and it’s all to play for. 

So how have we done it? Firstly I went to the right hospital under the best melanoma team in the world, had great support from Georgie, family and friends. The support from the melanoma team has been remarkable. My case has been presented at two meetings, one at ASCO (American Society of Clinical Oncology) conference and the other, a local meeting in the Marsden. This was to discuss my case to work out the future management plus inform other medics and scientists of the uniqueness of my case. 

I’m now at a weird point in my strange life. Will I get a long period of stability followed by either progression or regression of the disease? What will happen as I reduce the steroids? Will I have another flare of raised intracranial pressure (raised pressure in the head) and have a similar episodes to those before. Will the reduction in steroids and a future reduction in mycophenolate allow the T Cells to be more active, enough to get more shrinkage? Do I really need more immunotherapy? Many patients have had long responses without finishing the normal course of Ipilimumab and Nivolumab (4 doses, I’ve had 2). We are fearing that more doses of Ipilimumab may further terrorise my liver and bowels (resulting in liver failure). Along with that will I be able to reverse the side effects of the steroids and mycophenolate? Along with the large belly and the muscle wastage, I can’t focus properly in my right eye, I’ve got almost no hair on my legs and my taste has changed, the consequence being I enjoy chocolate a lot less. It tastes bland. 

The thing is to keep up the routine, stick with what’s working, I’ve been trying to go through a desteroidisation process. Along with gentle exercise, I’m trying to reduce the dose of steroids, I’ve had a mostly vegetarian diet (to reduce the amount of fat that can infiltrate my fatty liver – a consequence of the steroids), I’ve been taking vitamin D supplements, as that was low, and a probiotic of Bifobacteria, as that helped in mice, and lastly abstinence from alcohol. However I’m resigned so far to the fact that the only side effect of steroids I’ve managed to adequately control is the farm of candida (yeast/thrush) in my mouth with religious use of Nystatin. To be honest I don’t like how I look at the moment with a big belly, huge stretch marks, egg shaped face and fluffy hair, I look like a nutty professor. I’ve actually looked at myself in the mirror and laughed. On a meal out Georgie noticed a man going up to the salad bar who “looked just like Dave” and he did. Same glasses, height and physique. Georgie and the others wanted me to go up to him and say “you look just like my twin brother” I had to point out that I don’t look like Dave anymore and the guy would be like “er are you sure!?”. Discussing it with Dave later he thought it was very weird having someone who looked like us, then he remembered we’d spent most of our lives that way. 

I’ve been trying to actively reduce the side effects along with a very very slow wean in the dose of steroids. So over the last few months I’ve had very little meat. There has been an additional benefit of improving my bowel habit, I have self diagnosed mild irritable bowel syndrome. On top of this Ipilimumab notoriously causes an autoimmune colitis (inflamed bowel). Something which I have appeared to avoid so far. I had some meat on Tim’s stag do BBQ and this was associated with a rise in my liver enzymes afterwards and a devastating effect on my bowels. I’ve strictly avoided meat since then. This showed to me the importance of keeping up a routine. As I’m at a point now in treatment where I’m beyond scientific evidence, because it is all too new, I have to follow what I feel is working, as unscientific as that is.

I’ve alluded also to some of the exercise I’ve been doing. It started with me cycling around a small park on a Boris bike four months ago and with a lot of encouragement from Georgie. At the time I was using a stick to aid walking. Along with that I’ve cycled quite a lot since then, walked four miles in Bradgate Park, at some pace I might add. Plus I’ve joined a gym. Most recently a ten mile cycle along the Bournemouth coast with Georgie. The first half was lovely and romantic with the prevailing wind pushing us along. Only for the second half to be an horrific attack on my body on our way back against the wind. On Monday I played my first game of squash for almost a year against Dave and his friends. I didn’t lose every game.

The gym sessions I’ve had show me quite how much I have lost, this is because I’ve got a reasonable recollection of what I used to be able to do when I was attending the gym regularly whilst at university. I can now only bench press a small amount of weight and use the cross trainer for a few minutes. I’ve also done some swimming. I’m a useless swimmer, so although the distance is woefully short my poor technique means it was quite good exercise. The buffalo hump at the back of my neck makes it more difficult to bring my head above water when doing my preferred breaststroke, so mildly suffocating increases my heart rate that little bit further. Georgie and I tried a spin class, only the second one I’ve been to in my lifetime since a visit to fitness first with Dad quite a long time ago. So I knew what to expect, and thought it was going to be hard. It was actually extremely difficult, fortunately the instructor was good and didn’t judge us for sitting down far too early when we were supposed to be standing, plus we both kept the resistance of the bikes quite low to make it a bit easier. Considering how hard it was, it was impressive that pretty much everyone else in the room kept up with her.

More activity and reduction in the steroids has meant improved sleep. From January where I was averaging about two hours sleep a night, then went through a long phase of broken sleep, waking up with headaches and lying there until pain relief kicked in, I can now sleep for six or so hours straight and then doze until morning. The combination of better sleep and less steroids has meant a much improved overall quality of life. I feel for the last three months I’ve really enjoyed life whereas before I was unable to properly engage in it. The reduction of Prednisolone may come with an increased amount of headaches and symptoms.

So what have I learnt? What advice can I give?

Firstly routine, especially when you’re high on steroids, is very important, you don’t want your disease to define you but also it’s your highest priority. Go with what seems to work. Go to bed at regular times. Georgie read this and asked me “what routine do you actually have?”, then I realised I have absolutely no routine at all. However, it’s the advice I would give, it’s hard being a nomad living between places with various hospital appointments every week.
Secondly raise money and awareness, the outcome of which for me was totally unexpected but very rewarding. Don’t be afraid to tell your story, cancer awareness is very important because it tells people how far cancer therapy has come, money is vital too, as fundamentally it is required to continue this renaissance of treatments. It’s also lovely to give people some good news once in awhile, the media is too plagued with bad news.

Thirdly, try and not judge anyone, you never know what they’re going through. 
Lastly, go to the Royal Marsden.

15th – 17th July

Tim’s stag

Tom, the best man, and my former housemate, organised the stag do from Australia. No mean ask because logistics of contacting everyone when they’re asleep can be difficult. But he did a very good job. I personally thought I wouldn’t see him or his now fiancée George again after they left for Oz. I told him as much and we had a hug.

The stag was very suited to me. It was at Cotswold Glamping and it was exactly what it said on the tin. The beds were all in Tipis, which housed a big double with two single mattresses side by side. All proper mattresses. Along with the Tipi’s it had a heated swimming pool and a converted barn with an outside grill for BBQ. Due to the large contingent we had the place to ourselves, which was probably for the best. The first night was a Texas Holdem poker night plus a bbq. Matt and I arrived by train and we were picked up by Kiran. For a while in the accommodation it was just the old housemates. It was nice to sit there and reminisce. Gradually over hours everyone else began to arrive. We started the game at 9pm. Unfortunately I went out first but I was allowed to buy back in. By then I started playing much more conservatively and better, only betting on hands where there was a high probability of winning. As everyone else got more drunk, I slowly worked through the whole group. Ending with a showdown against Nick, who is a pretty good player. I won, and took the £75 prize, which pretty much paid for the rest of the weekend.

I went to bed soon after that, walking to the Tipi with a mostly full moon. As good as the evening was, I needed to go to bed. It’s important to keep a routine up.

I woke up the next day in a pretty good mood. After the breakfast was clay pigeon shooting. Having done laser shooting at Centre Parcs I was put into the group that had done it before. I started pretty well and went first only to then take on the instructors tips and got worse. Overall I came in the top third of the guys there. Not bad for the ill guy. By far the hardest part was getting a decent shot when the clay was aimed directly along the ground to emulate shooting rabbits, it bounced around and generally got harder during the morning as more clay remnants disrupted the grass.

We then went back to the glamping, and I was shattered. Tim was forced to put a mankini on, while they were chasing him around the pool, I tried to nap but after half an hour or so felt like joining them, for their crude version of water polo. We were having so much fun that we didn’t do the intended bar crawl and kept playing, stopping only to shower and to get Tim spin himself around whilst drinking quite a bit of beer. I won’t describe what happened, I’ll leave that up to your imagination, but rest assured it had the intended outcome. Throughout the day it became clear, with plenty of red faces, that the guys, including the doctors, hadn’t used enough, if any, sunscreen. I was pleased that the clay pigeon team provided baseball hats, but nevertheless it goes to show even the those who know the risks and with a large reminder (me) can still be very sun ignorant.

After that we had a three course dinner in a private room in a pub in Winchcombe. The food was very good, a particularly nice vegetable tagine for the main. We went from there to Cheltenham for a night out. I bailed, along with the bride’s uncle a bit before midnight. I crashed and woke up the next day. The rest of the stag party came back in packs the first group came back after a successful post club Pokemon hunt, and came back happy after catching Bulbasaur, Charmander, and Squirtle on Pokemon Go. The rest came back in dribs and drabs and we finished off the weekend with breakfast and a telling stories of the weekend.
Please check out my latest TV appearance

http://www.itv.com/news/westcountry/2016-07-18/under-the-skin-watch-our-series/

 

I’ve now been a best man three times. When you tell people that you’re going to be a best man, people (especially those who have been one) like to offer advice. It’s a tough task, because it is the most important speech of the wedding and is the one which the audience is expecting to be funny. But there’s this balance between what’s acceptable to say and what isn’t. All of my speeches have been well received, at least members of the congregation came up afterwards to say they were and congratulate me on them. At Dave’s wedding the photographers who weren’t aware of my story had to be consoled afterwards.

 

So this is my humble advice, from someone who really doesn’t think he’s a natural public speaker.  

 

• Prepare prepare prepare prepare. You should have plenty of warning that you’re going to be a best man. Start early, write down stories, after a while a few will come back to you. Ask around for other stories too from parents and friends. Don’t be afraid to edit or not even use their stories at all.
• Try and get a theme going through the speech. With Matt’s speech I drew on his love for his six pack and kept referring back to it. The story of the rise and fall of it was all in there, finishing with it being burnt off by the equatorial sun.
• Keep it raw. By this I mean write and speak from the heart. It does not need to be too laddy. After all you’re best man because you’ve not just been through the fun times but you’ve got them through the bad times too.
• Try to get a topical joke in. I managed to include a line about  Brexit..
• Practice, especially on a wife or girlfriend. Georgie had much more of an idea about what would go down badly and what would go down well. There’s absolutely no point upsetting the bride or anyone else at that matter.
• Try to fit in lines about other mates, after all they have been a big part of his life too. They’ll appreciate it and everyone likes a mention.
• Mention the stag do and get a cheer from the attendees in the audience.
• Try to add a last minute joke about the day. In Matt’s speech I started by a explaining actually what you secretly want as a best man is for all the speeches before you to go badly. I voiced my disappointment, that all the other speeches were very good. Even Matt’s groom speech where I knew he’d left it slightly to the last minute.
• Watch some other best man speeches on YouTube. Obviously you don’t want something that is too generic or formulaic but there’s some key things to mention. i.e. Bride/bridesmaids looking beautiful etc.
• Personally I think it shouldn’t be too long. Aim for 10-15 minutes.
• Don’t think it will be easy, this may be your only chance to be a best man. So do it justice. Also potentially a good speech might inspire one of your mates to ask you again. It’s likely to be your only chance to show you’re that witty comedian you always thought you were.
• Date a speech and language therapist. This is a very niche piece of advice. But Georgie has been very helpful.
• Don’t over practice, and try and ab lib a bit. Personally I have my trusty iPad to hand. Better than paper, as it allows for last minute changes and clear and large text. I learn a speech to the point where a quick glance at the text reminds me enough, so I can do my best to keep my head up facing the audience.
• Know the audience, get to the engagement party, stag and rehearsal. It’ll help you get to know where to draw the line. Plus you may uncover new material.
• Completely irrelevant to me but try and not drink too much.
• I always start nervous with speeches. Try to not be. The audience wants you to do well.
• I’m not a natural at this but try to enunciate properly, speak slowly and leave time for pauses.
• Talk a bit about the groom’s life, Matt made it particularly easy due to his heroics in Leytonstone as he was the young doctor who compressed a stabbed victim’s neck in Leytonstone tube station earlier this year. Matt deliberately walked back into the tube to investigate and help out putting himself into harms way. His Mum berated him for being so foolhardy afterwards and kissed him for being so brave. Many grooms won’t have such a dramatic story for you to tell, but think about it and try and draw on something unique to them.

Thursday the seventh of July was a good day. It started by bumping into the Prof who supervises the PhD student I was said to have raised money for. He recognised me and we had a good chat and he asked me how I was. This was in complete contrast to the beggar I walked past the day before who asked me for 50p. I politely declined. He then said “one day you’ll need help mate” I thought and should have said it “you have no idea mate”. Mum had successfully nominated me for a British Citizen Award, which I said I won in the awards blog. This was no mean process and it’s a very special award to win. The British Citizen Awards is a ceremony held bi-annually and recognises people doing extraordinary works in the local community. The awards take place in January and July each year, with the inaugural ceremony having been held in January 2015. The presentation ceremonies take place at the Palace of Westminster hosted by The Lord Dholakia. The only people that cannot be nominated are those with Queen’s honours e.g a Knighthood. There were over three hundred nominations. Mum actually nominated me late, but they considered her application anyway. It’s judged in a very professional and extensive way to ensure that the award continues to be meaningful. Some candidates are even asked for an interview. However due to the publicity of my story, the blog and paucity of time, that was thought to be evidence enough. The fact they considered me after the deadline made it seem likely that I’d be accepted. 

The day started at three pm, going through security at the Palace of Westminster. All 35 BCA winners, myself included, along with their guests and various VIPs were all clutching their invitations from Lord Dholakia. The invitation came with parliament’s official seal on it. I got talking to a gentleman in the queue who’d been the treasurer for his local PHAB (physically handicapped abled bodied) club for thirty years. We were then led to the Lords meeting room for afternoon tea and the medal award ceremony. 

Fiona Phillips of ITV breakfast television fame was the celebrity host. I wasn’t particularly familiar with her to be honest but she was really good and brought a sincere yet humorous manner to the occasion. Our table was laden with cakes, sandwiches, scones and some very good quality strawberries. We were invited to tuck in due to the length of the talks and yours truly, started straight away. I did what seemed like most award winners were doing, I found myself in the pamphlet before reading anyone else’s entries. I was near the end of the book so I took the opportunity to take my jacket off. It was frighteningly hot in there. Each person went up one by one with Fiona giving a little spiel about each. Eventually getting to me, the penultimate medal winner, I was handed a silver medal by the founder of specsavers and went off with pride. The medal is surprisingly heavy; the weight gives it a certain prestige.

Later after countless group photos, we met up with all our other guests for the rest of the day’s proceedings. I’d been cheeky and had the most guests, after enquiring for more. We clamoured onto a tour bus for a BCA commissioned open bus tour and a mid twenties chap gave a pretty good tour. There was a large sign on the side explaining who we were, for a second or two I pretended I was Jamie Vardy. The two big facts of the day was the explanation of why Lambeth Bridge is painted red as it is closest to the House of Lords which has red leather benches and this is in contrast with Westminster Bridge which is mostly green like the House of Commons benches. Then the tour went up Horseferry Road, named after the horses which used to pull a raft across the Thames before there was a suitable bridge. 

The tour ended at Church House which was very near Westminster (only we’d taken a long route to get there in order to enjoy the lap of honour). After sampling a few canapés, wine, or orange juice we all sat in lines ready to peel off and go to the front. The show started with a talk from Lonnie Mayne the head of Inmoment, who did a very inspirational speech. He came on stage with an impeccable suit but wearing red converse trainers. I have to admit I thought who’s this charlatan (I actually used a less archaic word) wearing red trainers. The colour of the trainers was due to his father’s wrestling shoes.

The speech went through his five pillars: 

• Awareness
• Gratitude
• Everyone has a story
• Respect and Kindness
• Put yourself out there

As he puts it in his speech the red shoes are to remind us “that none of us our meant to be mediocre”. So get out there and do something amazing. Just to give some more inspiration here’s a snapshot of some of the stories of other award winners:

• Max Morris, BCAv who collected lost golf balls from his local club and sorted them out, boxed them up and gave them to various charity shops. He did this for 18 years only just retiring at 105, he’s raised over £100,000 in this time.
• Barbara Craig, BCAh who set up ‘Nosh and Natter’ which enables local people to come and socialise and now gets 80 people together every month, countering loneliness and isolation in the community.
• Stanley Taylor, BCAc a former world number 6 at middle distance running. Now at 78 he still spends time coaching young athletes four times a week which he has been doing ever since his career ended.
• Torren-Lee Dewar, BCAa set up a dance company called Alliance Dance Unit, to give young people something positive to aim at and work towards. The amazing thing is he did this at 16, and in the six years since then hundreds of teenagers have passed through his dance company.

The presentation of the certificates involved each of the award winners going up and saying a few words. Unfortunately they were doing the certificate presentations in reverse order to the medal ceremony earlier in the day. I was thinking I had a long time to prepare my half a minute speech. I was now second up which caused me a bit of panic. Mum tried to record it, but somehow recording didn’t work so I’ll summarise what I said. (Mum has asked BCA for a copy of their video). I dedicated the award to all the patients who stood up and went into trials before me, thanked my family, friends and Georgie, told everyone the Marsden was great and explained how little I didn’t desire the recognition but it was nice. Then I went to leave the stage without my certificate for Fiona Phillips to remark that I didn’t want the recognition so much that I forgot it! Fiona was a good host. At times some of the medalists spoke for too long and Fiona was not so subtly instructed to speed them up but she flatly ignored them and gave everyone their big moment.

Overall it was a fascinating event and it gave us all a collective motivation to keep going. The press, the media and society should do more to reward the unsung heroes that we have. These people’s actions go beyond those people they’ve helped or the organisations they’ve raised money for, and stand as testament to what each person can do if they are willing to give the best of themselves. In my case if we all did more, cancer would be beaten sooner.

*BCAv for volunteering and charity giving 

Life, as I’m sure you’re getting from this blog, can come up with weird conundrums, for example planning for events that you’ve not been predicted to survive for. This summer so far has consisted of one wedding, two stags, Glastonbury, my Dad’s 60th birthday. Do you pay for these events in advance? Do you kick up a fuss and cherry pick part of the plans? How much planning do you do for them? Do you write the best man speech in past tense? 

As the months went on it was clear I would be alive to make the events, but then my physique has deteriorated due to the relentless steroids. So ironically they caused me some worry, despite being grateful that I could attend at all. The immunotherapy has kept things stable for now; this is despite not having had any for two months due to the effect it has had on my liver. This does not seem to be improving anytime soon. 

The events I was most worried about were Glastonbury, Matt’s stag and James’s stag. (in that order) I’d been dreading Matt’s stag to be honest, despite being best man, I’d elected to hand over the arrangements to George, due to poor health. The problem being, the event was in Edinburgh, and involved a 10 hour coach journey, a whiskey tour, white water rafting, plus typical stag do frolics. I don’t drink, I’m registered disabled, not a very good swimmer and my muscle mass is a tenth of what it was. I follow various melanoma Facebook groups and one message stuck with me. It was from a fellow male patient who felt he was a bit of a “weirdo” or “gooseberry” at these events. I’ve not had this feeling fortunately, I think partly because I’ve been so open about the diagnosis people just know. So when I flatly decline alcohol it doesn’t come across as rude.

Tentatively I had an idea of how to make the whole weekend easier and safer for me. After four emergency admissions to hospital you start to have doubts, particularly when you’re not feeling well. So what I thought was to be an awkward chat with Matt wasn’t. I wanted Dave (my twin) to come along to basically keep an eye on me. I was happy to pay for him to do so and he was more than happy to attend a stag. It turned out Matt had been worried about the whole thing too and independently had come to the same conclusion.

My only job for the stag was to organise getting everyone to buy ShiteShirts or a suitable awful alternative. Everyone obeyed to this apart from Nick, who I assumed hadn’t because of his need to always dress well, in fact it was a Facebook error and he wasn’t getting the messages.The coach actually left on time from Matt’s flat in Leytonstone, six of us were on the coach most of the party were joining us at Rugby. Ten hours later and we were in Edinburgh at “Kick Ass Hostel” it was a very nice hostel, complete with a decent bar, free pool and laundry. Having spent a lot of time in hostels over the years this was up there with the best of them.

We quickly got ready and went to the whiskey tasting, something I would have loved in the past, but now it was just unwanted temptation. I was offered to drink some and spit it out but that seemed like a start of a slippery slope that I did not need or desire. Next was food, anyone who has been on a stag do will find restaurants and bars can be quite obstructive, due to the large group of males, despite lots of men willing to spend a lot of money. A long time later we found a pretty decent restaurant of fusion food. I had some fish tacos followed by a Brownie slider (a chocolate Brownie sandwich) it was delicious. After that we went back to the hostel bar, played some drinking games and got merry. Well I drank orange juice and forced the groom to drink. The rest of the party went out but my night ended there.

The next day was white water rafting despite feeling much more able than I’d been for months, I was worried about my risk of drowning, so Dave and I plus another member of the contingent, went for a tour around Edinburgh. On the tour bus the mellow tones of an Edinburgh local surrounded us, we’d chosen well we had a proper tour guide. We went round the whole city then got off at the the national museum. After that we tried to go to the castle which was far too busy, had a drink on Victoria Terrace and then went back to the hostel for a nap and to wait for the rest of the party to get back.

The night out followed a similar, pattern food and then a pint. I left after that as by then I was seriously fatigued. Then crashed. Waking up to them coming in at 3am or so and a big drunken hug from the groom. After breakfast we got the bus back.

The second stag do was for my friend James Manning who has now eagerly tied the knot to the lovely Nichola at the weekend. His stag was in Sheffield and activity filled. Fortunately Dave and my brother Paul were both invited, so again I knew they would be there to keep an eye on me. The accommodation was very rustic and clearly had seen better days. It was an old climbing centre. We got there before everyone else did and due to traffic they were very late. En route to the pub,which was a mile away, I realised that it would be very dodgy going back in the dark, so I pulled out and went to sleep.

The next day started with a Zombie apocalypse. It was good, moving around an old warehouse trying not to get bitten. I informed them of my medical condition and ended up getting along very well with our instructor, who was wearing a pink breast cancer band in honour of his wife who underwent 6 months of chemotherapy for that very cancer. The staff were very sympathetic to me sitting down randomly, our captain was reasonably impressed by my reaction speed at shooting one of the Zombies, I’ll put my fast reflexes down to a positive effect of the dexamethasone.

After that it was three hours of go karting. Two sets of 10 laps, followed by three separate finals. I was relatively useless at it but I didn’t come last overall. Following that, it was quick turnaround back to the accommodation to shower and out for a curry. After the curry I hoped the bar would be conducive to chatting but it wasn’t, the “Bierkeller” an authentic Bavarian experience, was nothing near that. Everyone was standing up on stools and tables, which were soaked with beer, singing to what I call “end of the night songs” e.g. Hey Jude – by the Beatles, something I would have embraced if I wasn’t at reasonable risk of falls, particularly after such a tiring day. Paul drove us home and we woke up the next day. We met Georgie for lunch in the sun in Leicester, she’d been to a wedding, and then after dropping us off Paul headed home.

Overall both stags were very enjoyable weekends with a good chance to catch up with old school friends, meet the rest of the stag parties, get to know the parents, and reminisce about Leicester Medics Rugby Football Club. It also showed that I could do it.

Then there was Glastonbury, which I knew was going to be a tough one, I had hoped we’d made it easy enough for me. We had elected to glamp in Worthy View Campsite, and I’d arranged for disabled passes around the site.

I even said to Georgie that it would be 50% probability that I couldn’t make it a fortnight beforehand, then we also thought, due to her recent hospital admission, it was likely she’d had the same probability. Again we tempted fate and on the Monday after I published the last blog about Georgie’s sepsis, she woke up not feeling well again. She went to placement on painkillers despite feeling faint with severe abdominal pain. After her day on placement she went home, despite being next to A&E and went to bed. It made me think of the day before I was diagnosed, when I was at work, that you can be quite ill in hospital but feel strangely isolated from it and don’t feel that you can tell people you are ill because you’re too busy putting other people first and helping them. Georgie got worse and fortunately two of her housemates were in. They took her back across the road to A&E and she was assessed again for another bout of sepsis and admitted to a surgical ward to a different hospital in Leicester. The treatment she got was slow, tedious and inadequate. Despite having a temperature of 38.9, a fast heart rate and raised white cell count in her blood (if you remember from the last blog this is systemic inflammatory response syndrome) and a likely infection, so Georgie was septic, despite this she was just given painkillers initially and told not to drink or eat. It took almost eighteen hours before she was commenced on antibiotics… I’ll stop there, because her treatment makes me so angry, especially compared to the treatment she got in London. It goes to show that people’s awareness of sepsis still isn’t good enough.

Anyway Georgie didn’t end up leaving hospital for three days. Glastonbury was that weekend, we really wanted to go even if it meant turning back when we got there if it turned out to be too much. On turning up to Glastonbury everything went reasonably smoothly but it was obvious the mud was a big concern. Dave turned up just as we got there and we got a shuttle bus around the site to our campsite. We sorted our things into the tent, had a nice cup of tea and then headed into the festival site. Unfortunately, the slope down, and obviously back up to the site was really really steep and long. It was far from ideal for a wasted cancer patient and a not long ago septic patient. We got down to the site fine and started to walk around but really this was no better. Glastonbury is very very busy, plus it was an exceptionally muddy year. There was lack of any places to really sit down and when you stood for too long you got stuck. We saw Bastille as the sun was setting, which was excellent, then we tried to get to the pyramid stage, en route Georgie and I found a bar to sit in and realised how exhausted we were. We took an hour and a half to get back to the tent sitting when we could. Georgie was having some abdominal pain and I was very very shattered. Due to my wasted calves and foot muscles my wellies rubbed atrociously and I already had blisters and sores on my calves. We got quite cold sleeping, plus Georgie needed a wee and the toilets were further than I had hoped, (probably not quite the glamping experience Georgie was expecting, but it was all fun and games and made her laugh that I was woken up to take her to the toilet in the pouring rain at 3AM). 

In the morning we woke up in a storm, we both looked at each other and we felt trapped. The sun came out and we wandered around the campsite, before it got busy. In the peaceful moments of the morning Glastonbury was fascinating. We went to get a cooked breakfast in a teepee , and we people watched, including two guys who’d not been to bed yet and one of whom was literally incapable of moving from the cafe back to his tent. We then got a smoothie and gazed over the Glastonbury site on a bench. By then I’d already made the decision to be “evacuated” and Dad came and collected us later that day. Overall we’re both very glad that we went, we saw and we tried. But it was too much and would have been dangerous to stay there. I had visions of me falling over in the mud and lying there “until someone did something about me”. Not so secretly, Georgie was perfectly happy to get back to my parents house in Bristol, with a warm shower, close clean toilet and watch Adele and Coldplay on the TV with my parents. We could have stayed longer, if I’d managed to secure the disabled campsite (I was too late) and it had been less wet underfoot, but overall we’ll be sticking to either day festivals, nice B&B’s, spa hotels and of course the weddings.

Luckily my Dad was able to collect us from Glastonbury and at my parents house we had a thoroughly nice time. Dad pressure washed all our stuff, we laid down for a nap and realised how exhausted we both were. We did a bit of shopping on the Sunday, including a new case for Georgie and got a coffee and went for a curry night.

The funny thing is I wasn’t disappointed and actually loved the 24 hours Georgie and I were there at Glastonbury, it was proper teamwork from the both of us, we had a chance to soak up the feel good atmosphere and we got out before we put ourselves at risk. It really is a miracle that either of us could be there. It is weird to accept that there are things you can’t do but that’s life. We cut our losses at the right time and had an excellent weekend regardless.

There are a few things which aim to improve the lives of disabled people. I have tried to make use of the perks that you’re given, the fabled Blue Badge was very helpful on James’ stag do for example. I have a London “Freedom Pass” which gives me free bus and tube travel. Lastly the benefits are keeping me afloat too. The times I’ve asked for a seat on public transport, people have readily obliged, usually more than one, without batting an eyelid. But there’s definitely some simple things that could be done to improve the lives for the frail and disabled. Would it hurt to have benches on every tube platform? Or more benches everywhere? The tube unfortunately was woefully underfunded for years and many of the stations don’t have step free access, but surely more of the staircases could be converted to escalators?