Of 18 Months

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.

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Of Stag

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/

Of Best Man Speeches

 

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.

Of Mark William Sims MBChB BSc BCAv

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 

Of Events

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?

Of Sepsis

Of Sepsis

This blog requires a little bit of pre information to bear in mind whilst reading.

Sepsis is a life-threatening condition that arises when the body’s response to infection injures its own tissues and organs.

Medically it is defined as Systemic (whole body) Inflammatory Response Syndrome (SIRS) plus evidence of suspected infection.

SIRS criteria:

-Respiratory Rate greater than 20 breaths per minute

-Heart Rate (pulse) greater than 90 beats per minute

-Temperature greater than 38 or less than 36 degrees Celsius

-White Cell Count (these fight infection) greater than 12 or less than 4

Other points to consider:
-Sepsis has a 16 percent mortality.

-A temperature of 41.1 is a medical emergency.

A chaotic two days, in late May.

I eluded to this in a previous blog but Georgie and I wanted to publish this when things were more clear. In late May I went with Georgie to a hospital appointment of her own. She’d had an abnormal cervical smear during routine screening and needed further assessment with a colposcopy and potentially a biopsy. Now this is no mean feet, if there’s one thing Georgie despises in life, it’s personal gynaecological assessment. Nothing quite fills her with more dread and loathing than a gynaecology examination. Fortunately she was first on the list, the Nurse Practitioner doing the test was fast albeit formal, this was despite Georgie informing them at the beginning how anxious she was. So Georgie was at unease throughout but at least it was over, and unfortunately they did take a biopsy. We sat down for a long time afterwards and then left. I reassuringly and unhelpfully said “well this will be the longest time until the next one”, how wrong I was.

Later that day we headed to London, this was due to me needing blood tests at the Marsden and we had arranged to go to a pub quiz in Putney. Everything seemed completely fine and we took the boat down the river to Putney and met with friends. We all danced to the music round the table and then went home again. Apart from Georgie feeling sore in her abdomen and on a background of feeling a bit rubbish for the last few weeks or so nothing seemed overly amiss.

The next day, I woke up at my normal 4am and was typically lying there restless and awake for a few hours. I took some Zopiclone (a sleeping tablet) and slept until half 8. The problem with Zopiclone is that it has the hangover effect and I was feeling a bit disorientated. Georgie had been writhing around in pain, and was suffering. Ironically she’d been trying not to wake me up. Georgie was very agitated but I felt it was due to abdominal pain and was trying to calm her down and then went and made porridge thinking food would help. I came back to “Examine me” “examine me”. I found my thermometer and blood pressure cuff (I carry them everywhere), it read 38.9 degrees. I sprung into action. The blood pressure was fine on the cuff but the heart rate was a very worrying 122. SIRS. What is happening? Georgie needs an ambulance. I rang an ambulance they were dubious initially about coming immediately, I was a little incensed as she hit the SIRS criteria implying something nasty was going on. But what!? He said a paramedic would call me back, I then told him I was a doctor. During this time the paramedic had called, but I was on the still on the phone to the operator. Before I got around to ringing them back the sirens were blasting down the road. They had to be for Georgie. I buzzed in two very nice paramedics. The source of the infection was difficult to ascertain: headache, neck pain, inflamed tonsils, a productive cough for weeks, the cervical biopsy yesterday and abdominal pain. Georgie was not being a simple case. We got into the ambulance. Other than a 12 hour stint during my ambulance day, at medical school, this was the first time I can actually remember the journey. How did this happen? We had been planning for a quick blood test then off to the Natural History Museum. Then it got worse, despite Georgie having had paracetamol and ibuprofen, which both lower temperature, the ambulance windows wide open, her temperature had risen to 40.9C. Life is wacky and so fragile. Georgie had not only just become a patient, but a very sick one at that. She needed antibiotics and fast. Due to the high temperature, the blue lights came on and minutes later she was straight into a resus bed at Chelsea and Westminster hospital. She was pounced on by the awaiting staff. Her blood pressure was lowering and she was peripherally shutting down (to try and keep blood in the vital organs) so they had difficulty gaining access with the cannulas (tubes into veins to give fluids and antibiotics) into her arms. Her oxygen saturations were lower than usual. They were very fast, very friendly and very efficient. She was started on IV Morphine, fluids going in fast and a large cocktail of antibiotics (Ceftriaxone, Gentamicin and Metronidazole), the decision slightly impeded by Georgie’s penicillin allergy, at least all these other doctors had no idea where the infection was either.

After seeing Georgie again on resus and seeing that she was just about ok/high on morphine she told me to go to the Marsden to get my bloods done. Both of us patients for once. Her mum was very near by then.

Back at Chelsea and Westminster Georgie was admitted on to the Acute Assessment Unit for further IV antibiotics, gynaecology review (including another speculum exam), abdominal US scan and a chest X-Ray. After the initial treatment she had started to feel much better and I optimistically thought she’d get out that evening. However by the evening and just prior to seeing the consultant she had deteriorated and was rigoring again. They then sent an FY2 doctor to take further blood cultures to try and find the causative bacteria. A few stabs later she eventually got some blood. Georgie’s heart rate was still high and her blood pressure was still low despite the antibiotics and the litres of fluids put into her.

A lot of dithering happened over the next two days and Georgie was still breathless. The chest X-Ray was discussed with the radiologists, the radiologist felt there were signs of a pneumonia or pulmonary embolism (PE). Also Georgie’s tonsils were inflamed. Each doctor seemed to have a different opinion on what the final diagnosis was and whether an abdominal ultrasound was really necessary. But once a diagnosis of pulmonary embolus is even considered, it has to be ruled out and that’s difficult. A D-Dimer test (the blood test to rule it out) came back raised, this leaving us none the wiser. After measuring Georgie’s oxygen level directly via an arterial blood gas (needle into the artery of the wrist) which came back at 14kPa (which is normal, in PE it can be low), the radiation risk to a young woman was deemed too much for a CTPA (computed tomography pulmonary angiography – the definitive test for pulmonary embolism) due to a PE diagnosis now being very unlikely indeed. She was given 8mg Dexamethasone to open up her throat. My personal opinion is she had sepsis either from the tonsils and a pneumonia. After ten days of clarithromycin Georgie’s cough has cleared up and she’s feeling much better, just a bit run down. However health can be more complicated than that, the lack of real clarity with chest X-RAY Georgie is having another one in a couple of weeks time to see if everything has resolved.

The whole experience was very emotional it showed me how vulnerable anyone is and how fragile life is for everyone. Having seen these situations now as a doctor, patient and a fiancé. I can confirm the latter is the worst. I was too unwell as a patient to know really what was going on. Georgie was critically unwell until the antibiotics got in and I was frightened and scared of the outcome. You feel so much more helpless and the situation is so out of your control. A temperature of 40.9 for a period would be fatal. As I doctor you get into a professional mode where you’re almost automatic, you don’t give yourself time to reflect on the personal grief of every case because if you did you’d have to quit. As a fiancé the fear of losing Georgie was overwhelming and that’s a feeling I’ve given her too many times. Georgie could have easily died that day particularly if she had been alone. How would she have called an ambulance or when it came been able to open the door? But as I keep alluding to, the saga didn’t end there.

The bad news continued, the result from the colposcopy and biopsy came back as CIN type 3 (Cervical intraepithelial neoplasia (CIN) – disease confined to the epithelium). In other words, this means there were high grade dyskaryotic cells (cells which have the ability to spread) which are potentially cancerous in Georgie’s cervix, which could spread to other parts of the body if they breach the basement membrane, it’s cancer in a pre-invasive state. The type refers to the depth of the cells within the epithelium and type 3 is the worst as there’s dyskaryotic cells across the full thickness of it. The exact risk (although we were told it’s very high risk) of CIN 3 turning into cancer is unknown but it is felt safest to remove the affected tissue.*

The biopsy result meant another colposcopy, this time with a particularly nice consultant that Georgie liked, and an excision of Georgie’s cervix. Ironically Georgie has just started her gynaecology placement and spoke about how she will probably be sitting in the consultants clinics next week. Georgie and I joked at least she’s in the right place! The problem is Georgie now requires a 6 month and then yearly follow ups for the next ten years and the results of the excision biopsy takes four weeks.

Georgie and I discussed whether to include the gynaecological story in the blog at all. We realise as medics we’re quite open about bodily functions, which can be surprising to non health professionals. At first Georgie felt not to include it into the sepsis story, but when the results came back as serious we both strongly felt it was very important to highlight how important smear testing is. Georgie said that if this makes just one person not ignore their smear test or go to the doctors if they are getting any abnormal symptoms then it has been worth it. During my gynaecology placement at medical school the consultant described our screening programme as a modern day miracle and the best in the world. The mortality rate of cervical cancer in developing countries is ten times higher than it is here. The discrepancy is partly to do with our cervical cancer screening which prevents 41% of cancers in 25-39 year olds and 63% of cancers in 49-54 year olds.

The process of going through a smear, colposcopy with or without biopsy is a bad one and seeing Georgie go through two colposcopies and a smear reminded me why around 25% of women don’t go for smears. It’s embarrassing and you’re in a vulnerable position with two complete strangers. It’s uncomfortable. Georgie was stopped from fainting after both biopsies. This being said the result shows why she needed to go through with it. The CIN tissue has hopefully all been taken away and we can go back to me being the sick one.

*https://www.bsccp.org.uk/women/frequently-asked-questions/

Of Awards

I have not written a blog for a while; this was in part due to success from the last one which had some of the best feedback and an eagerness to update you all when the chaos ends. But when does it? 

I continue to get blood tests twice a week to monitor my liver enzymes (which have been raised) as the immunotherapy has likely caused a hepatitis (inflamed liver). This has meant and continues to warrant a large amount of immunosuppression with the steroids and mycophenolate. The latter is an immunosuppressant and used mainly in organ transplant rejection. The rationale behind this is to treat the autoimmune hepatitis. Due to the hepatitis, I’ve not been able to be given either of the drugs (Ipilimumab and Nivolumab) since the 11th of April, for fear they will exacerbate the immune response and completely smash my liver, which is also full of fat thanks to the steroids. Whether this brutal attack on my immune system is affecting my response to the melanoma remains to be seen. I’m much better than I was and the last two weekends I’ve managed to get to two brilliant stag do’s with help from my brothers. I’m now well in the process of trying to reduce my steroids and counter the muscle wastage. This is with a meat free diet, walking up stairs, cycling and latest a bit of swimming. All this with my new personal trainer Georgie (although she barely does any exercise herself!). This is all coming from using a stick just a few months ago. Wish me luck. 

For those who have been following me on social media will have noticed that I’ve won a lot of awards now. I personally thought the pinnacle of my achievement would be the FY2 Merit for Leadership I received from St. Helier Hospital which was presented last summer at a teaching session with my fellow colleagues. Maybe that was overly pessimistic. The recognition was nice but even then I thought it was uncalled for. Throughout this I just did what I thought was the right thing to do. 

The next award came again quite out of the blue. It was a vote on Twitter for the BMA top doc 2015 on social media. For two good reasons; I was unaware that this award existed and I didn’t use Twitter very much, which is the irony of winning the award and if you’ll remember I was an inpatient at the Marsden. Fortunately we strummed up enough support to win the vote. 

A theme formed; prize winning in hospital. My CV has boosted to new levels. Again I won an award that I’d never heard of, The University Of Leicester Outstanding Alumni Achievement Award. This I found out whilst sat in Georgie’s Northampton Hospital Accommodation. My nominee phoned me up to explain that I’d been nominated and would I be available to go to the award ceremony. He was under strict instructions not to say that I’d actually won but with a bit of pressing this was implied. This was again no mean feat and previous winners include the head of the cardiovascular unit in Leicester, a paralymic archer and the person who found Richard the 3rd. I couldn’t be there as I’d been admitted to hospital but I received the trophy later on from my hospital bed. Georgie and my family went to represent me and Dave delivered my speech. 


The latest award occurred on the 10th June. This time out of hospital. The Cancer Research UK Flame of Hope Awards. I was nominated by Lynn (my Cancer Research UK – CRUK contact) for the Ambassador of the Year Award, and what do you know, I won! Dave, Mum and Dad came with me to the event, disappointingly Georgie had uni that day. It was at Merchants Taylors Hall right in the city of London. An elegant venue dating back to 1347, and also an honourable one, as they were giving the whole day away for free. This was good quality meals for free. I was pleased my new found vegetarianism paid off and the food was exceptional. I went wearing a three piece suit. It felt very good wearing one, when you’re out of work and feeling ill, appearance isn’t always your priority. I was the only one there wearing his twin’s suit and the only one in a waistcoat, but for two very good reasons. The first because my suits no longer fit my CushingsMcCushingsFace frame and the waistcoat… because I’m a winner. 

The event was completely overwhelming and I’ll explain, it was such a big occasion. Firstly the chairman of CRUK came over to us whilst I was in the courtyard, we had a good chat, he’d given up his time to CRUK for 6 years to the cause and is stepping down from the role this year. Furthermore I was sat next to the CEO on the table plan. The CEO a Knight no less. Two of us on the table were award winners. The conversation flowed and I started with my story, which would be too self indulgent to repeat (even in a blog about the number of awards I’ve won). The other award winner Caroline Jones (@knickersmodelsown) was receiving Pioneer of the Year Award, she’d got involved with CRUK after her mother died of cancer. Her mother volunteered in a CRUK shop and Caroline decided to show the merits of second hand fashion by wearing a different outfit bought from CRUK shops every day for the whole of 2015, an idea she thought of on New Year’s Eve 2014. She kept a blog and this has been published in a book (please buy). All proceeds go to CRUK. Over the year she had a lot of media attention, went on the One Show and Loose Women. She raised a lot of money and increased the profile of CRUK shops throughout the country. Throughout, the only item that wasn’t second hand were her knickers, hence her Twitter account name. 

That’s just one story of many. All the winners are in the picture above. Minus three who have died, plus a few non attendees. For this reason it was actually hard not to cry throughout the award ceremony due to grief and the inspiring stories. The first story was of a teenager Charlotte Eades who kept a popular video blog of her experience of living with a brain tumour. She has now died at just 19, her parents collected the award on her behalf. The other stories I can recall, were of: a 97 year old who was still volunteering in a CRUK shop, she looked 80 by the way; a lady, who over the years has raised a million pounds; the Young Fundraiser of the Year, who raised £100,000; a guy who’d been running the great Christmas pudding race for years; a 93 year old who raises £1000 a year from her knitted tea cosies; and lastly the joint Ambassador of the Year Award (with myself), a breast cancer patient, Alex King who literally bared all for world cancer day. 

Apart from being there to bring down the average age of prize winners, why did I win? I guess it’s due to how powerful the narrative has been. It is a story of survival, love and a desperate desire to beat cancer sooner and raise awareness. Being a doctor and knowledgeable has helped, plus the ruthlessness and honesty of the blog. Lastly everyone likes a love story (it’s even better being part of one). However, I could’ve been more ruthless, cancer is terrible. Due to all these reasons, the story was as many of you know, widely shared. It’s been in over 100 local newspapers and local news channels here, as well as publications in Dubai and Australia. The justgiving page has funded equivalent to three PhDs. But most of all my story is a recognition of the coming of age of targeted cancer therapies and immunotherapy. But to labour a point, one we need to fund because they work! 

The overall consensus from all the winners is none of us did what we did for any recognition. From the stories it was clear most of the winners would never have got involved if they weren’t personally affected by cancer, be that themselves or a loved one. They did what they did and continue to do what they do to make it better for the next generation of patients and achieve the goal to Beat Cancer Sooner. But well it’s been nice winning awards. 

Dave joked to me during the day that you’ll only know you’ve done well when you’ve got an award named after you. He’d forgotten that my old supervisor had arranged this, and the “Mark Sims Prize for Laboratory Excellence” will be presented soon. It’ll be given to a medical student who has shown great competence and dedication during their laboratory year while studying for an intercalated BSc. 

It doesn’t end there. Next month I’ll be receiving a British Citizen Award, a prize started in 2015 as a way of recognising outstanding achievement in the community. Mum nominated me for it after seeing an advert on the internet. Hopefully I’ll be able to receive my medal at Westminster Palace no less, followed by a certificate. I’ll also be able to name myself Dr Mark Sims MBChB BSc BCA.