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.



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. 

Of Chaos

There has been so much written about cancer in countless blogs and books about people’s journeys – many I will never read and never relate too. It’s completely impossible, all these words: a fight with cancer, their battle with cancer, I’ve described it as a marathon, yet nothing really describes it. Can the essence of it be understood? My word at the moment is chaos. I am stuck in this black hole, never to pass the event horizon, everything even photons are sucked back in. Because basically you get to a place, or at least I am, where you have absolutely no …. idea what is going on. I live each day futureless. I cry on good beautiful days and I cry on the bad. I cry on the good days because Georgie and I know how great our future would be, (or we’re watching 24 hours in A&E). I cry on the bad days because I’m living a nightmare. I swear more than ever. I never used to swear much. I’ve even sworn in clinic. I’ve signed up to a trial where a group of pathologists will literally unpick the melanoma from my body before I’m cremated, at least in ashes I’ll be melanoma free. I said to the doctor “I will do anything to beat this … disease and if giving my body away is what I have to do that’s what I’ll have to do” (this is a family blog, but it needs to stay honest). I don’t know how often they cry, in oncology I guess you’ve got to be pretty thick skinned, but both the doctor and Clinical Nurse Specialist had tears in their eyes that day.

In some ways a more preferable death with more closure would be a car accident. Job done. Is that a sick thought? At least the narrative would be clear. I feel this line could be controversial, but I’m desperately trying to give real insight into how it is. I’ve had days when I’ve updated things like my CV and the dreaded medical portfolio thinking I’ll need this, and other days when I think what’s the point. The point is at 15 months I had hoped for some sort of certain narrative. I’m currently hanging on slowly, losing bits of me one by one. Brain mets stopped me flying in aeroplanes and driving a car, radiotherapy took my hair, (although it is growing back). Georgie said the last time we went on a Boris bike (about 3 months ago) that we had to do it, it was getting late and we were both tired, we needed to do it then or we may never do it again… We hadn’t until a few days ago. We walked past them and Georgie said why don’t you try it again, I feared having bad balance and my thighs have wasted (using a stick when I walk). She sat on a bench and watched me go round in circles round a little green. We were both pleasantly surprised and happy that I was able to do it and actually found it easier than walking, so the next day we went on a short cycle ride (but had to get a taxi back because Georgie was ill – turns out this was building up to an A&E and inpatient admission. But that’s a whole different story!).

It’s slow and cruel this disease. It has changed my mother, my father, my fiancée and my brothers into carers. Cancer doesn’t just change who you are but risks changing your loved ones’ perception and memories of who you once were. It corrupts your own memories. Even your mood becomes chaos. Personally sometimes I feel the steroids are almost worse than the cure, to hang on to life when half the time I feel slightly out of body or half the time manic, trying to come across not too irritable. Mid afternoon after the full amount of Dexamethasone I’ll probably have a heart rate of 110 and for an hour or so, it’s hard to focus on anything. I’ve got a farm in my mouth, taking Nystatin almost constantly only seems to keep the yeast (candida) to a field as opposed to a full cattle ranch in my oral cavity. I’ve got fat around my neck (buffalo hump) and central obesity with massive stretch marks. I sit down half way through washing up and my hand actually got so tired eating popcorn too fast during the cinema that I was concerned I was getting right sided neurological weakness. As I write this in the middle of the night, I realise it hasn’t just taken my sleep but it’s taken my dreams too. Being future uncertain makes all decisions so much harder. For example, do I continue the steroid appetite of basically eating what I see, because life’s too short, or do you try and diet to stop the stretch marks and looking 32 weeks pregnant? Although beating the latter is probably impossible because the metabolism of my body has been synthetically deranged by the steroids. It’s even hard to summarise who I am now, a bald disabled fat erratic man with a stick who cries a lot. This is from only months ago when I was a half marathon doctor, running with a beautiful fiancée and being my brother’s best man. I now have a sad thought, of me wasting even further looking more like withered old man with Dave literally carrying me from place to place… I’ve chosen diet and more exercise but will it help?

Is this all too negative? The point is it probably isn’t. I try to be positive because I find the positivity then resonates around me. I also consider myself a positive person. But the reality of this limbo of survival is impossible. It’s borderline, it could go either way. If life was fair, Georgie and I should be living together in a cosy flat making wedding plans, me with a job on A&E, and Georgie finishing off her degree.

The immunotherapy seems to be keeping me alive and, giving me that all important thing of time, but as I think I’ve made it quite clear, at significant cost to the health and sanity of myself and well, those around me too. Stuck in chaos makes you want to scream. To loosen up, Georgie and I the other day just listed all those words that still mean something. You know the ones, the angry horrible ones. Dave and I have had our voices imitated much more than most of our friends over the years, due to the bumbling and mumbling nature of it. This has improved over the years and I now like the uniqueness of it. Being slightly incomprehensible has worked for Boris Johnson after all. The beauty is, people don’t think this voice, which is far removed from anyone starring on Jeremy Kyle, would come out with anything vulgar so that makes swearing that bit better. It means when I say them there’s still that feeling, that relief of tension, that inexplicable emotion related to living your worst nightmare. A nightmare you cannot even describe. Forget how you’re supposed to relax, yoga etc. And in your head or out loud just scream that word and maybe just maybe you’ll feel better. You might then have some idea how I feel, because I certainly don’t. All I know is I’m grateful for every second of every great day that I’ve spent with those I love. Life is great. But I can’t help thinking that with a perfect fiancée, a good job, and a lovely family, cancer is a cruel … disease.

Of Pentamidine

Due to the high dose of 16mg Dexamethasone (which I’ve been taking to reduce the inflammation in my liver), and the fact it is becoming seemingly unlikely that the dose is going to be be lowered any time soon, it was deemed good practice to protect me from the nasty fungal infection of Pneumocystis Jirovecii which can infect people whose immune systems are suppressed. This occurs typically in patients who have HIV but in my case would be from the steroid suppression of my immune system. So it was arranged for me to come in electively and have the drug. Unfortunately this high dose of dexamethasone (a steroid) has wasted my thigh muscles and I now walk with a walking stick. I also feel and look heavily pregnant because of central fat deposition being another unattractive side effect of the drug (along with many others).

The day started weirdly, as I was called by a receptionist wondering where I was at half ten, despite being told that the appointment was at one. This was surprising, as brilliant as the Marsden is, appointments are rarely on time, and definitely not early. Georgie and I were a bit annoyed that it would be another day in the Marsden but resigned ourselves to it. We left encouraged that the day would run smoothly, the receptionist had after all implied everything was running two hours early. After a little bit of effort and speaking with two helpful receptionists we found the right place. It was a little confusing because it was in the private ward. Presumably this is because all the rooms are side rooms which is important for administration of the drug.

Pentamidine, (personally I’d not heard of it), reduces the risk of Pneumocystis Pneumonia by 70%, and is given via nebuliser* so remnants end up in the atmosphere. The remnants can cause bronchospasm in people in the vicinity, so there’s a potential risk of an asthma like reaction to staff and visitors. However this wasn’t explained to us, so when the Nursing staff have to wear special masks and aprons whilst in the room and the patient is isolated whilst having the drug and for thirty minutes afterwards, it is all a bit concerning as to why it is ok to be breathed in by me. Lastly, so the nurse who’s giving the drug isn’t at risk of this at all, the patient is asked to turn on the oxygen to get the nebuliser running themselves.

Despite the receptionist wanting us there early things didn’t kick off until one pm. By ‘kick off’, I mean that they said hi and explained what was going to happen. I’d have a salbutamol nebuliser first to open my lungs and then the drug. Time went on and then we started at half past two. However it was wishful thinking that this would run smoothly.

Georgie and I were both getting hungry and it was running into our Thai food time by then. I had the salbutamol nebuliser and was told that the Pentamidine was on it’s way. That came, Georgie left the room, and I was instructed to turn the flow to 10 litres after the nurse left the room. Within seconds of doing so the tube burst from the plastic chamber and the toxic drug was over my chinos and a nice T-shirt I’d had for my birthday. I was stuck, isolated, knowing that no one else could come into the room, for a while at least. I pressed the nursing bell but this was pointless due to the isolation. I then phoned the ward, trying as always to use the automated switchboard “Wiltshaw Ward” “Calling Mr Willow unless you say cancel”. Do these ever work!? My first thought, what if it’s damaging? Anyway I eventually got put through, via the operator, and explained to the nursing staff what had happened. They were looking for the right masks to be wearing, as they needed more, and I’d have to bag my clothes in a special bag. I texted Georgie as there was no answer “Call Me xxxx” she thought when reading it “I leave him for five minutes….” her first thought was had I had a nasty allergic reaction to the drug. I explained the situation and she was concerned that his supposedly toxic drug was all over me and that no one could enter the room to help. The drug would have to be prescribed, dispensed and collected all over again.

All this decision making took it’s time. I was still in isolation and Georgie was fed up and hungry so I told her to get her favourite Pad Thai from Crown Pub, only for the kitchen to be closed. It was official then that today had become a hospital day, and we had not come prepared. We try so hard to make them interesting with more entertainment than other patients’ appointments, nipping out for food when we can, surprising the staff with Catan etc.

After another hour or so, I reprompted the nursing staff about the drug, they came in and the first thing they said was “it’s not your lucky day”. Pharmacy had somehow put the wrong patient label on the drug. I was promised it would be changed and in twenty minutes I would be breathing in the drug again. Another forty five minutes almost five hours later or eight hours after the reception had asked me to be there, I commenced the drug and it was vapourised beautifully into my lungs. After the wait I got out as fast as I could grabbing some complimentary private ward biscuits on the way, and in my swish green hospital pyjamas, I headed as fast as I could to Georgie, who’d not seen me all afternoon. We looked at each other wondering what on earth had happened, somehow I was left alone for five minutes at an appointment and came back without my clothes!

*think a big inhaler. Oxygen/air is driven through a plastic chamber vaporising a liquid containing the drug you want to give and the patient breaths this in through a mask or funnel.

Of Football

I’m sure you realise it’s hard not to get nostalgic at this point in your life and a quote from my Dad got me thinking. “it’s a very important week for football” was Dad’s quote this week with Mum replying “is football ever important”as Brighton urged closer to promotion, three teams were on joint points (87)* at the top of the championship and on the verge of the premier league. Actually the most important promotion in football. Dad had just collected Mum and I from the station and we wanted to sit down and chat. The game was over and Dad knew the score however he wanted to see the punditry and the highlights of the second half he’d missed. Middlesbrough had slipped up and drew 2-2 leaving with Brighton with a game in hand. Along with that Bristol Rovers (who Paul, Dave, and I support, Dad supports them too but that word in his case doesn’t compare to what it means for him and Brighton) are close to promotion too. Lastly of course Leicester City have taken over the country’s imagination. So yes I think it is a pretty unique week in football with the Sims Family football teams all eyeing for promotion. If all goes well with each team fortunes I’ll be very glad I’ve been able to live to see it. Dad will be acting like he’s had 16mg of Dexamethasone and that is something not to be missed.

Because I’d love to see it happen I’m very sympathetic to Dad’s overwhelming addiction to the beautiful game, despite being only about as 10% a football fan as my Brighton Season ticket holder father (who lives in Bristol), I just about understand his madness. It’s actually a passion that’s hard to explain to those who don’t get it. I’m a score checker and very occasionally go to games. Georgie was completely unaware of the Leicester City mind blowing story until I tried, unsuccessfully I might add, to get some auction prizes from them, Georgie was like “who would want prizes from them” only for me to point out they were top of the most popular league in the world. She didn’t believe me and after answering yes to “what better than man u? Chelsea? Arsenal?” And any other big football team she could think of she was left a bit dismayed (especially as she lives next to the stadium). I like many have been following Leicester for the last part of the season, obviously accused of being a glory hunter only for me to point out that I went to uni there, the response “did you ever go to any games?…” my response ‘yes to sit in the away end’.

But I used to go to more games as a child, we’d go to perhaps ten games a season a mixture of Brighton away games when they were playing near Bristol or Rovers games. The epitome to Dad’s unwavering dedication was an away game against Kettering, we were standing next to the pitch barrier in the terraces, the view was awful, the weather grey, the football woeful and Brighton were losing. At half time the consequences of an overused shack of a toilet became very apparent and the toilet burst, you’ve guessed it, flooding our way, the crowd made a Moses impression and parted. We were left with nowhere to go but we were raised just enough not to get wet. We stayed for the whole next half. You may think we should have left or there’s a degree of neglect being surrounded for that long by human waste matter but we didn’t. This is what we did, and to this day I still think it was funny and I wouldn’t change it for the world.

*tables correct as of first draft

Of Combination 

I have now been on a combination therapy of Nivolumab and Ipilimumab for five weeks, I was starting to lose a bit of optimism as Pembrolizumab had not worked as well as we had hoped. It’s been quite exhausting the last few weeks and Georgie and I were desperate to have some quality time together as she was really busy on her A&E placement as a medical student and did not have much time off. So over Easter we went to Brighton, a lovely Good Friday, one year on from our first date in Greenwich. It was lovely starting the day with Georgie’s Sister-in-Law cooking poached eggs then getting the train to Brighton. It was a very nice day and powered by the immunotherapies in my blood stream, I felt pretty good and managed quite a lot. We had a wonderful fish and chips on the pier in the sunshine, life felt very normal for once. We walked round more then went for an Indian meal in, the South Lanes, which having lived in Leicester for years did not live up to much.

The next day was disappointingly eventful. This is life as a cancer patient, it is so up and down and unpredictable it does not help that my body either seems to be fine, or it is confused, weak with speech difficulty and there’s not much in between. We got breakfast in a very nice cafe, then went on the bus city tour; the weather had deteriorated from the day before but it was a pleasant way for disabled me to see the sights. Whilst on the bus we discovered the mini golf on the sea front. It was pretty cold but regardless we had a go. Georgie was on fire and I was consistently my inconsistent self, getting some good shots but blowing it too many times. Georgie managed mostly holes in two without needing her trademark “practice go”. We were feeling tired after this and went back to the hotel. “The Royal Albion Hotel”, location and price being excellent, the room itself being ok and the clientele should probably read my last blog about alcohol. Despite it being three pm when we were allowed to check in, many people had cracked open the beer whilst in the check in queue and there were plenty of empty bottles around the hotel. It struck me as a hotel that had been very “Royal” and had slowly changed. Regardless it was just what we needed.

During a nap I changed. Georgie started to get concerned with me and before I knew it two nice Brightonians in green paramedic uniforms were in our bedroom, I remember talking to them but I do not remember the ambulance journey and before I knew it was ten pm Matt Sims had turned up and it was clear that our holiday was not turning out as we had expected. After receiving some IV dexamethasone I was significantly better. The whole time the doctors were insisting on a CT head scan, which I was agitated about and refusing. I’ve heard all this second hand because I actually can’t remember any of it. Both Matt and Georgie agreed it was pretty pointless. The problem is the next day the registrar convinced me that the scan would be quick, and he would not be doing his job properly to see if I had had a bleed in my brain if he did not do one. I indulged him and eventually we left, by then I was more than fine. The scan again showed nothing new. Helpfully, though, I asked the health care assistant (who asked us about applying for medical school) about places to eat and he came up with a very good option for Matt, a vegan, and Georgie a veggie. Iydea is a canteen style vegan cafe, in the pretty North Laines (commonly misspelt ‘Lanes’) and it was very good indeed. We left Brighton after that hoping things that weekend would not repeat themselves. Georgie was still off for two days and we chilled.

However it was not to be, on Tuesday through the grapevine my team had heard about my admission and asked me to come in for an emergency appointment, classically I thought it was pointless but it was not. I became increasingly confused throughout the day and ended up being admitted once the registrar saw me at the hospital. I ended up having another CT head scan that again showed the same result. There was a bit of hanging around with them trying to give me oral dexamethasone but me refusing and Georgie insisting for IV dexamethasone. I went home on Thursday and I actually started to feel a bit better over the next week. Admittedly I was still weak and had a bit of a headache but a hospital admission seems to get further away. I had an outpatient appointment on Thursday the 7th and was given the all clear to stay at home. The lymph nodes in my neck were showing signs of flattening off and so were the tonsils.

On the Monday 11th things were starting to look somewhat better, the day I got the drugs again, the tonsils were looking smaller still, the LDH (lactate dehydrogenase – a crude marker of disease activity) is going down. Out of hospital now seems like the status quo right this second, but having had so many admissions it never seems very far away. I’ve had another week since, been to watch the Lion King musical with Georgie which was brilliant and gone to Cornwall, little victories.

It is a terrible thing to say but as my health has deteriorated, (post dabrafenib which had kept me in pretty good health) the cancer is starting to define me. Having cancer does define you because quite simply it won’t go away, please add harsher language, saying it’s a marathon not a sprint just doesn’t give the fight justice, it’s everything. You try not to think about it, but something else happens you celebrate a small decrease in LDH because that implies perhaps the disease is finally under control (maybe) but then a couple of days something else hurts or in this case you get some side effect or other. Basically it’s impossible to have any real idea what’s going on. In this case, one of my liver enzymes (ALT) has increased quite a bit, it’s not too high yet, but needs monitoring, as its over five times normal. Cancer never lets up. It makes relationships seriously hard, there’s loads of strains. I’m a proactive man and never wanted to be cared for. It’s embarrassing having to have Georgie and Mum carry my bag, not being able to go away with Georgie, the burden of me on her exams, it’s complete chaos, so unpredictable, she’s given so much but I struggle to give back because I’m ill. I want to be a fiancé, son and twin brother, not cared for. It really has just become a big wait; will the combination work or will it not? Will I get a normal life back or not. I’ve fantasized about the future and it’s great, my overwhelming wish is for the team to sedate me for six weeks or however long it takes and pump me full of drugs, radiotherapy and whatever else it takes and come out the other side, I’d be wasted, disoriented, perhaps have a DVT but I’d be cancer free. You see I’m not giving up and I’ll do whatever it takes but trust me if this happens to you it will be the hardest thing you’ll ever do.

Of Alcohol

I am tee total and have been since Dave’s wedding where I had a glass of champagne, prior to that I have drunk very little since diagnosis of stage four. I’ve not always been tee total and in actual fact my birthday present that people donated to, very shortly after I was diagnosed was three expensive bottles of whiskey which I’ve shared at times and drunk sips from early on are now firmly left on the shelf. However the choice of gift does show that I used to drink a reasonable amount in my past and quite enjoyed it too, particularly single malt whiskey.

Something has happened since reducing alcohol and later completely giving up. I’ve realised quite simply, it’s completely pointless, to the point where I suggest you giving up. It’s clearly a very toxic drug, I went to brunch the other day and reflected on times in the past where I may have been eating brunch, typically in Bar Dos in Leicester with the boys, and not be feeling great because of a hangover, probably having forgotten the night before and struggling to get my food down. Ok on this occasion I did not feel perfect because I’m unwell, but I enjoyed it more than those previous experiences, where you’re going through the healing process of eating and refuelling as opposed to enjoying the food and everyone else’s company. There is a degree of camaraderie in this healing but why not enjoy that feeling as opposed to the solidarity of a painful sobering up experience.

Personally alcohol never really made me happier on a night out, perhaps obviously, less inhibited but there would be frequent times when I would fall asleep on a sofa or worse the toilet. Then getting home and thinking I should have been here a lot earlier. Plus most of the times I can remember being very grumpy were when in the grip of a hangover.

For many people drinking is in their history. They feel it is part of who they are. They are drinkers and have never found a reason to give up or really think about changing. Alcohol is part of their social life, but actually it really does not need to be. It’s a bit annoying when I’ve gone for Afternoon tea with Georgie and find we are paying for the champagne that is part of the deal (first world problems) but that’s life. Georgie barely drinks either. Most of you will know the effects of alcohol and know that primarily the government guidelines for safe drinking are now 14 units per week for both men and women, with two days off booze. That’s approximately 7 pints of beer a week. It becomes a scary prospect when you realise the number of nights out where you have had more than that. Then there’s the money. I think the last drink I bought was a £6 pint for Matt Smith, totally absurd. Half the problem is the alternatives are not acceptable to everyone. One there’s no effect, two, most soft drinks can be finished too quickly, three, many soft drinks are too sweet and not very adult.

Personally Schloer is a favourite drink for me to share with Georgie, particularly the white grape variety. It’s also got a great name. If you sit there and say “Schloer” a couple of times hopefully you won’t think I’ve had too many steroids and start to agree. Or in restaurants I’ve started getting milkshakes, if they are available, for something thicker which takes longer to drink. You can get some great flavours too, even peanut butter. Georgie sometimes buys me non alcohol lager either Beck’s or Cobra. It’s a good alternative but both are quite fizzy. Whilst trying to buy it for me though, to celebrate my birthday and finishing her exams, Georgie had the rather bizarre experience of being asked for ID in Morrison’s. ID to buy imitation alcohol! When each bottle clearly says “Alcohol Free”. Yet it caused a problem on the self-service checkout and Georgie got asked for identification. She was not carrying any because she was traveling very light to her exam. Despite Georgie’s pleas that she is 27 and she is not buying alcohol, (like someone a decade younger), she ended up needing her friend to buy the non booze!

The choice is yours of course and this is not a nag, but maybe give it a try. I have a strong feeling that many of you would not miss it very much and you might notice how much better some of the rest of your life is. Along with giving up or not starting smoking and of course NEVER USING SUNBEDS the decision to give up alcohol could be the best lifestyle advice you can take on.

Mixed News

A blog has been long time coming because I was concerned about the next results. After the 3rd dose of Pembrolizumab things started to change, firstly I started to notice that swallowing some tablets became more difficult, particularly the big calcium supplements that I bought to try and counter some of the side effects of the steroids. I was staying with Georgie’s hospital accommodation in Northampton at the time and it started quite good humoured. I thought that I may have tonsillitis or glandular fever and showed Georgie. She said that they looked swollen and to go to the bathroom to see them better. With the help of my phone torch, there was something instantly wrong. Initially it was quite hard to show her the back of my mouth, but when I eventually arranged my tongue in front of the mirror it was obvious that my tonsils were black, black as melanoma. We both stared at each other in the mirror in shock, “you’re not going to faint are you” a reactionary and an inevitable statement and as if by magic it happened with me catching her and slowly getting her to the ground. Her waking up wondering what had happened just 5-10 seconds later. This reaction was due to what this news means, we didn’t think it would spread anywhere else, let alone the tonsils. We didn’t know it could go to the tonsils, it’s so rare. It was also the first time we could actually see the melanoma staring back at us, the ugly thing in the way of our incredible future together and the thing that is causing such heartbreak. 
This led to quite a bad Saturday where we made a little den with the duvet on the floor and cried. Georgie was worried they would get bigger and close my airway up, but there was no point going to the Marsden because it was a Saturday. On the Monday an MRI head was done and the Head and Neck team looked at my tonsils with a scope down my nose and the plan at that time was to carry on. To cut the tonsils out they would need to stop the immunotherapy for a theoretical problem with healing. The MRI head at that time showed stable disease, therefore the plan was to carry on, which I felt seemed quite optimistic, but there’s a paucity of choice in this game. So had the fourth dose of pembrolizumab on the 24th February and fingers were crossed. The hope with the tonsils was that actually disease can come up and go back down again on immunotherapy and four cycles is usually how long they give that to happen. But I think from my tone that you know where this is going. So I had the Pembro and a scan was arranged of the head, neck, chest, abdomen and pelvis for two weeks time. While I was waiting lymph nodes in my neck have came up too. On Tuesday I had these scan results back that did not show what we hoped for.

In that period I had an episode again with neurological symptoms. It all started with right leg weakness. I was trying to get from the sofa to the toilet, Dave caught me in the end although I was adamantly trying to get there, eventually he put me to the ground and I crawled to bed. In bed getting right arm weakness and a change in voice. From then on I do not remember much but Matt Smith came and despite my insistence an ambulance was called. Georgie then turned up too from Leicester and they did their best to calm me down in resus. Apparently I was very agitated and angry that I was in A&E. Eventually they had to give me some diazepam so they could give me painkillers and get me into a CT scanner. This episode was treated with a lot of steroids again and lasted about 10 hours on Thursday and I self discharged after that. These symptoms have now totally resolved.

This episode happened on an important date in my life; on Thursday 10th March, The University of Leicester were giving me The 2016 Outstanding Alumni Achievement Award. I woke up at 3am in the morning asking the nurse who was sitting next to me what was going on and hoping she was wrong when she told me it was Friday. I wasn’t aware that whilst I was confused and agitated in resus that a difficult decision was made, but I’m glad Georgie, Dave, Alice, Dad, Matt and Rachel still went to the event to represent me and accept my award. Dave edited my speech slightly and did a good job of giving an acceptance speech, especially as he was not planning on going to a black tie dinner that evening, let alone speak in front of over a hundred of Leicester’s finest. Mum and my brother Matt were in the hospital looking after me. My nominee Martin made a brilliant and well researched speech too. It was lovely to get more recognition and to be one of an impressive list of prize winners from past years, including the head of the biomedical research unit, the archaeologist involved in finding Richard III, and a Paralympic Archer.

With each month and doses ticking away since starting Pembrolizumab I had been getting more confident, but it would appear now that that was optimistic. As much as I had shrinkage at the beginning of the immunotherapy all the way back in December, that has not lasted long, the steroids may have affected the efficacy of the Pembro, but we will never know, after all I only had two days of it without any steroids at all. Also the radiotherapy may be the cause of the stability in the head. The head is stable, which is good and is stopping killing me at present. But there is some growth of a couple of lesions in the liver, spleen, a new nodule in the lung and of course the neck and tonsils. All which are growing. The hospital admission and bad results has spooked them from giving me Pembro last week and the plan is to start treatment with a combination of Nivolumab and Ipilimumab today.

Nivolumab according to the Prof is pretty much the same drug as Pembro, because of trials it needs to be given with Ipi as opposed to Pembro. This is kind of the problem with being a guinea pig as these drugs are so new; the prescribing, licensing and funding are all still very much in the air.

I will not and won’t give up but this is becoming quite the marathon. It does not help that I am still on steroids for headaches and for brain swelling and this could be putting me in a Catch-22. It’s not just a marathon for me but for Georgie and my family too. We have so many great plans that just either need to be put on hold or get cancelled. With Georgie she’s just finished her exams and we had hoped I’d be much better. We are all so grateful for your ongoing support.


One Year On

It is my pleasure to announce that I’ve now survived for one complete year and two days from diagnosis of stage four malignant melanoma. The length of time is presumably longer since being stage 4, but we will never know the actual date. It has been a group effort and you’re all a part of that. Nothing short of it, I could not have got this far on my own. This is a very large thank you list.

Saskia – the Skin Cancer Nurse Specialist who told me the diagnosis and invited me to speak at her conference. A clip from my speech appeared in “Before I Kicked the Bucket: The Whole Story”.

The SHO who admitted me and was very proactive in getting both an ultrasound and CT scan so quickly. As well as knowing that Saskia would take over my care so aptly. 

Mum – for being there every single step of the way. She’s only missed one appointment. 

Dad – for endlessly seeming to ruin his holidays! 

Dave – for being the better twin and letting me be his best man. 

Alice – for being Dave’s rock in all of this and letting me stay in their flat rent free.

Matt – for asking too many questions to the doctors 

Matt and Alexia – for putting me up for a few days after my third hospital admission. 

Paul – for his endless support, for his persistent and constant literature reviews on melanoma. I had to question him whether he knew the difference between a heart attack and cardiac arrest because I was starting to think he was doing a medical degree on the sly. 

The family – for their love, support and endless commitment. I see too many people come to appointments alone. I usually go with an army. 

Marilyn and Keith – for the support you have given to the whole family. 

Bradshaw and Manning – for taking my stuff from Kingston Hospital to the Marsden after I was unexpectedly found out that I wasn’t going back to Kingston.

My team at the Royal Marsden – particularly Nikki Hunter my CNS, Prof Gore and Dr Spain, the registrar I have seen the most for good continuity of care. Dr Larkin and the rest of the team need to be mentioned here as well, because of their expertise. They would have had lots of input in my case both, behind the scenes and at various multi disciplinary team meetings (weekly cancer meetings). Both Prof Gore and Dr Larkin have had huge input in all the trials, with the Marsden typically being the largest recruiter to the immunotherapy trials internationally. Therefore they are the most experienced melanoma oncologists in the world. When treatments are so new that you’re pretty much a guinea pig that’s very reassuring. To put it simply, I’m in exceptional hands. 

Dabrafenib – well goes without saying. Absolute life saver. 

Steroids – for acutely saving my life. 

A quite specific thank you to “Pembrolizumab for advanced melanoma not previously treated with ipilimumab” NICE technology appraisal guidance [TA366] Published date: November 2015. Conveniently came out a month early than previously suggested on their website, literally in time for me to have pembro. 

James Allison – (Who’s he?) the inventor of ipilimumab and therefore immunotherapy for cancers. Due for the Nobel prize for medicine. I’m sure you’ll all agree very well deserved. See this interview, at least for a bit, he’s just so unassuming despite saving countless lives and creating not just a new drug but a whole class of drugs. Absolute hero, thanks! James Allison

Kieran, Lucy, Dave and Alice – for negating wedding presents and asking their guests to donate to my page instead. Furthermore for giving us a fantastic wedding weekend.

Bradshaw and Bex – for kindly putting me up for six weeks. 

Bradshaw and Westminster School – for letting me talk in such a prestigious venue.

John Cabot CTC and Mr. Wilson – for inviting me back and organising a non-uniform day.

Leicester Medical School – for being damn good. 

Leicester Students Union – for their donations plus getting donations for two varsity matches and thinking of me one year on. 

LMRFC – for just being great, great calendar, great fundraising, great club. Also loads of them did the Leicester half marathon. 

Nick Robson – for doing the Leicester marathon.

Everyone else who’s raised or donated a single penny to my cause, the list is far too large but thank you!

Wales and Co (Before I Kick The Bucket) – Huw and Rowena – not just for giving me the opportunity to be on TV, but for being great friends too. 

Lynn from CRUK – for being my ‘handler’ (she does not know I call her that), but seems fitting as she has organised a lot of my charity work and the news appearances on BBC, ITV and London Live.

All the newspapers and articles – well all the media really. If just one person stops using a sunbed or more parents coat their kids in sunscreen, I will feel I’ve done my bit. Plus please give up smoking – it’s the best thing you can do for yourself. 

To all the people who have let me stay anywhere rent free. I haven’t paid any rent for over six months now and to be honest I’m not entirely sure how other patients can survive. I get personal independance payment (previously disability living allowance), something I did not ask for and despite being a doctor had no idea I was entitled to it. It’s not a lot of money and would not go a long way if I was paying rent, especially in London, for a place that was clean and not damp.

Matt Smith – for being the hero of Leytonstone and being a very very good friend and asking me to be his best man. 

Rachel – for being Matt’s better half.

Gavin – for letting me be his best man and throwing a thoroughly enjoyable wedding. 

The readership – wow you’ve been amazing, like I said at the beginning I had not written much before. But I think my style has improved so thanks for bearing with it. I’ve had over 60000 hits and I get hits from countries I’ve never been to.

Rob and Rachel – for endless twittering.

Dr Deveson – for pointing out #topdoc15 to me.

BMA – for giving me the prize.

Davide – for being inspired to do the 10k.

Croydon friends – You’ve been great.

University friends – You’ve been great. 

JJ Appreciation Society – You’ve been great.

Bristol friends – You’ve been great.

Rich Rainbow – for his support to my CV, after two years of trying to publish some of my work in the lab, he now can’t stop publishing papers. He has also convinced the medical school to name a prize in my honour too. I hope you make Prof someday!

Leicester A&E – For giving me a job, which was quite a risk, it turned out to be a large waste of time for them but I thoroughly enjoyed every shift. The nicest moment was a patient saying I was the happiest doctor they had ever met. 

Gary and Georgia – My old scout leaders, for continuing to fundraise throughout the year and collecting money at their annual hiking competition the Rikard Shield. 

Georgie’s housemates and her friends too – the only apology on this list and that’s for stealing all of her time! They are all my friends now too.

Georgie’s family (Kevin, Gillian, Jona, Felicity and of course Smartie and Skittles) – for being unbelievably accepting and just lovely people (and cats). 

Georgie – and I’m not embarrassed to say this I shed a tear writing this, for being my everything, making me happy and giving me something to live for. I’m not going to lie, every time I read what I’ve written I smile again and a bit of tear comes out. I cannot and will never be able to thank you enough. 

And lastly anyone I have missed – thank you.

Of Steroids



January has been a long long month, for the first half I was averaging 2-3 hours of sleep per night so my days dragged on. This is because of the steroid dexamethasone, which I’m taking to reduce the inflammation in my brain. This blog is basically one long moan, about the drug which saved my life. Steroids have a lot of side effects particularly at the dose I was on, initially started on 16mg in total per day intravenously (into the vein). For the health care professionals who read this blog that’s equivalent to just over 100mg of prednisolone. It was a war in my own mind to work out what symptom was caused by what, either the cancer, sleep deprivation or the steroids themselves. I was being extra cautious as not to end up in hospital again; so I didn’t take any anti-sickness tablets, anything stronger for pain relief other than ibuprofen and I bought a blood pressure cuff as before my BP went up and my heart rate went down (Cushing’s Reflex).

The side effects are all encompassing, both mental and physical symptoms. I’ve been properly hypomanic a couple of times. That means mania but still functioning, think of a person with bipolar. I definitely had pressure of speech (where you literally speak your mind), flight of ideas (ideas racing through your head, not really focussing on one particular thought before moving on). It was exhausting and occasionally I just felt irritable. Along with that though had some short episodes where I was quite low, I even had some intrusive thoughts of walking in front of a tube train, a very scary experience and I just cowered onto a bench until the train came. All the mood changes were short lived unlike bipolar.  But worst of all was the lack of sleep. The steroids were compounded by the fact I am a bit of an insomniac anyway, because I have cancer and I’ve never been able to lie in. The reason for the poor sleep and the mood elation is that dexamethasone mimics cortisol (the stress hormone). Cortisol is the hormone which literally gets you up in the morning, and it’s levels are low at night. But if you’re taking it and a lot of it, then it makes sense that you cannot sleep, furthermore it pushes your mood up. Your brain ends up in constant on mode. Put it this way one of Georgie’s patients recently became psychotic just on 30mg of prednisolone only third of what I was taking at the beginning.

Sleep became an obsession. The first Sunday out of hospital I rang up and got a prescription for temazepam (like Valium) to help me sleep. Afterwards, Georgie and I went to the massage place I had a voucher for from Georgie’s Brother and Sister-in-law. I took two zopiclone, a sleeping tablet, and two temazepam throughout the night. I slept 6 hours! I was so relieved. Thinking I’d cracked the nut. I had tried everything before that. I was a bit against taking Zopiclone prior to this because previously it’s given me a bit of a hangover effect. However the steroids wired me up so much, like 6 cups of coffee, this was not a problem. It reminds me of my easiest diagnosis as a doctor. Where a older lady was drowsy and the son was looking bemused as to why the carer had called an ambulance. She had taken her midnight medications, including Zopiclone, by mistake morning instead. Diagnosis: asleep.

However alas, the 6 hours sleep was a one off for most of the next week. Back when I was more well, I have had a few shifts at work where I’ve not slept beforehand. Sleep has now improved as the dose has been weaned down. Just to pass the time I ended up doing quite weird things in the middle of the night like unsubscribing from all my junk emails or downloading the Mandela film, at that point I just had to watch it, fortunately it was good and I’d highly recommend it. Apart from that some programmes Georgie and I starting watching for example, Making a Murderer, but this added to my poor sleep, due to making me think a lot.  We then stuck to watching Gavin and Stacey which we’ve watched before and Don’t Tell the Bride. Both very uncontroversial. Gavin and Stacey albeit old, it’s brilliant and we can watch it over and over again and still laugh.

Memorable moments this month include going to watch “The Curious Incident of the Dog in the Nighttime” a play made from the book. The main character has Asperger’s syndrome (high functioning autism) and ends up making a journey to London, for reasons I will not spoil, the set was actually the best part. A light show with lots of noises all around this was to try and emulate how hypersensitive  people with his condition are. But so was I. While watching it constantly stroking at my beard and getting lost in the set. I was hypersensitive too. At one point he steps onto the tracks at an underground station, to try and catch his pet rat, I was frantic my heart rate going faster, I do not usually respond quite as dramatically. But right then I thought what was happening was much more real.

Dave, Rhys and I went to Alexandra Palace to watch the snooker, I was so high on the steroids that everything was in Ultra HD. The balls of the snooker table were elegantly poised swimming on the surface of the green. We chose a particularly good match to see Trump Vs Robertson, (kind of depends on your opinion on watching snooker!) both players were on fire and the game ended 6-5 with six centuries throughout  the frames. The whole day felt like ‘the curious incident of the dog in the night time’ as it felt that I the jolly cancer patient was doing so well. As it was the furthest away from the comfort of the Royal Marsden that I’d been on public transport.

Next is the profound difference these drugs have made on my body. I realised early on how weak I had got from the short stay in hospital and the very high dose of steroids. Most people think of anabolic (build muscle) steroids which people abuse in the gym. Dexamethasone is catabolic (destroy muscle) and cause muscle wasting particularly of the quadriceps (thigh) and upper arm muscles. Georgie even said “but your thighs are your best bit”. The picture attached shows the calves of both Dave and me for comparison, (useful to have a twin brother). I decided a thigh photo was a bit risqué. It’s slightly misleading because his calves were a little bigger than mine beforehand, but the difference is most certainly more marked now. The worst moment was just out of Royal Marsden Sutton Hospital where I needed to bump start my brother Matt’s car. We had to get my potassium checked as the result the day before when I was an inpatient came back as low. Please see the video of me drinking SandoK YouTube . A potassium replacement drink that tastes like drinking seawater. I was pretty much useless at helping Matt either using the steering wheel which lacked power steering, as the car was not on, as well as well as pushing the car. Considering I used to be able to press the whole stack of weights on the leg press machine on the gym, steroids had taken their toll. Matt albeit athletic, is much more Mo Farah than Usain Bolt and was not too helpful either. Fortunately some guys came and helped us out, only for Matt to drive up the hill too fast for me to catch him. Right then I could only run ten metres, so much for half marathons. I’ve also lost height. Along with all that, my neck is larger and I’ve now got a small buffalo hump on the back of my neck. Most annoyingly is my back, I have mild curvature of my spine, as Dave crushed me in the womb, something which gave me pain for years until I started working on my back in the gym. After that it became a thing of the past. With the muscle wasting it’s come back with a vengeance.

Then there’s the head, I have to keep wondering what is causing any headache, as dexamethasone causes eye pain, headaches and even pounding in the ears. Sounds all a bit like having brain cancer or raised pressure in the head. Knowing this actually helped me wean the steroids down. As I’ve said, I’ve been very tentative with taking painkillers too, absolutely no opiates (morphine/codeine) and sparingly taking ibuprofen. Testing what was cause and effect. Edging the steroids down and seeing what happens. Hoping that I didn’t vomit, lose the ability to write, or speak.

There was a moment later on in January where I was napping whilst in Georgie’s student hospital accommodation, and she needed to get in as I had the keys. A mixture of poor signal, she was using Whatsapp call, and me just waking up made her think I was having a repeat of the previous pre New Year episode as I was making very little sense.

Lastly, there’s the issue of long term side effects, thin skin, increased risk of diabetes and osteoporosis. Regarding the first there is very little I can do apart from continuing the wean. Perhaps it is not helped by the humongous appetite steroids gave me especially on the higher doses. One day I had 8 weetabix, two bananas, 5 cookies, a sandwich, toast and a calzone. To combat Osteoporosis I enquired about taking bone protection (bisphosphonates) but lacked evidence plus I’m in a very low risk group for getting it. As I’m a male who did a lot of exercise particularly hiking as a child/teenager. But to feel I’m doing something I’m taking over 50’s Osteocare which is full of calcium and vitamin D.

My fear with this blog is it sounding negative. What I will say is the steroids brought me back to life and I’m grateful, but even more pleased that I’m on a lower dose now for my sanity and my sleep!