Oh Well Here We Are…

Matthew Syed wrote a wonderful book in 2015 called Black Box Thinking. Now I’m not going to attempt to recreate all of the key themes and learning points from that book – he’s a double Olympian and best-selling author with a column in The Times. I’m a dude in the suburbs with a laptop and an English GCSE. But like many of these books the key message is right there at the start.

Syed’s point is that the key to developing excellence, whether individual or systemic, is establishing a feedback loop between your actions and the outcomes as well as process by which you can, critically, learn from your mistakes. In that first chapter the example given of excellence in this area is the aviation industry with their in-flight black boxes, no blame culture and detailed post-accident investigations. This feedback loop and desire to learn rather than blame or make excuses is why flying has become so safe. But Syed also gives a contrary example – a system that should have similar motivation (saving lives) and capability (highly educated staff & lots of data) – but where the culture and egos mean learning is much slower. The medical profession.

OK, so this really is where I stop trying to summarize his book. And, more importantly for your attention span, get to the point of how this relates to me. I had a rocky week with my care team and for the avoidance of doubt – they fucked up. More than once. In an unacceptable way. Let’s do a little bullet point summary:

• Week 1: sent me a letter booking my oncology call for 0900 on the Wednesday. No call by 1145. I call my CNS and she says she can see my papers are in the stack and i’ll be called by 1300. I wait. At 1430 i call back. different CNS. HHHHmmmm this shouldn’t have happened – I’ll call the doctor he’ll call you right away. No call the rest of the day.
• Later in Week 1: CNS calls me. says she is confused. she doesn’t understand but from what she can see I’ve been transferred onto the palliative care pathway and this must mean my cancer has spread. She adds that my request to be transferred to community care for my pain management has been approved. I had what it’s fair to say was a sense of humor failure. But luckily I knew enough about how this process works and haven’t had any scans since my initial staging work. So i told the CNS she must’ve been mistaken. She insisted she wasn’t and that she was looking at the paperwork. I explained that what she was going to do was hang up, get her shit together and call me back. She agreed that was a good plan and said a doctor would call me back. To her credit she called back 30 mins later, explained there had been a mix up at her end due to the funding source for my treatment and confirmed that there was no change in my care or diagnosis. Again, to her credit, she apologized and said the mistake was hers.
• Week 2: sent a letter booking my oncology call for 1015 on the Wednesday. nothing by 1130. same as last week. call the nurse….your papers are next in the pile…the doctor will call within 15 mins. 90 mins later a call comes through. No hello or introduction, asks for Mr Smith…i say that’s not me…doctor tells me it is me (bullish move to tell me who i am – gotta respect his confidence) and that we spoke earlier that morning. I say no and ask the caller’s name and what the complaint procedures are. They hang up.
• Doctor calls back 15mins later. It’s clearly the same guy. Tries to pretend it wasn’t him. We wade through that. I ask what is going on with my oncology calls. Doctor tells me we spoke last week. I says we didn’t on account of that not having happened. we go round in circles. I ask him what happened with the previous call and he says he was looking at my number when he was trying to contact the patient before me and that he didn’t hang up but got cut off. I ask about the CNS call telling me i was being moved onto the palliative pathway. He gives a viable explanation for this but one entirely different from the explanation given by the nurse. I ask how all these screw ups have happened and he says they won’t happen again.

Now all of that is bad. very bad. If this were a paid for service with alternative providers i don’t think you’d go back. And there is a certain concern that comes from knowing that the people responsible for making sure the drugs going into you are effective and safe can’t, in the very best interpretation of events, remember names, times and numbers. But what makes it worse is that at no point did any of the staff identify clearly what had allowed these mistakes to happen or how they might be prevented from happening again. All i heard was egos and apologies. That is how you repeat mistakes until something very bad happens. Let’s re-imagine the the call from the CNS but now i’m 40 years older and English isn’t my first language – how might that call have impacted me? Or let’s imagine it goes the other way and their penchant for mixing up numbers results in somebody with a much worse diagnosis and outlook than me getting a call to tell them my good news. imagine the impact of that.

It was a bad week for learning culture and black box thinking.

But it was an ok week for me. Bloods all good. Cycle 3 kicked off without the need for on the day bloods. And now, ten days later I’m almost at the halfway mark of chemo.

Sorry for leaving you on a cliffhanger dear reader. Where were we? ah, yes. neutrophil levels. So first some “science” then how it impacted me.

So neutrophils get counted by some medical “stuff” and after this “wizardry” is done you get given a number to one decimal place. Hope you’re coping with the level of technical detail i’m providing here? The normal range that you probably sit in is 2.5-6 (well lots of different ranges are given by different credible sources but this is indicative). If you’re below 1.5 that’s an issue. You’re immune system won’t work properly leaving you vulnerable to infection. If you’re below 0.5 then that’s really an issue and your immune system really isn’t working and you’re really vulnerable to infection. To have your chemo infusion you need to be above 1. Got it?

I started treatment at 3.5. So, normal but the low end of normal. No particular reason given for this and I’ve always been pretty good at staying healthy and staving off infection. When i had my pre-treatment call before cycle 2 i was at 0.5 but with the normal progress of a chemo cycle this would be on the up and so off i went on that Friday to get bloods done immediately before getting hooked up. Aaaaand i was then at 0.3. Bum. So i was sent home for a week’s delay. No advice given on what to do other than rest but stay active and listen to my body. A fellow cancer train passenger recommended cold water showers but the only meaningful side effect i have is sensitivity to the cold. hhhmm.

Even a couple of weeks down the line from then it’s hard to remember and understand how hard this setback hit me. I don’t think i’d now even call it a setback with the benefit of perspective but it certainly felt like it. I think the triggering issues (beyond the delay to treatment) was the lack of control. I’d done all that was asked of me. I’d stayed home. Rested. Eaten well. Taken steps to avoid infection. Stayed hydrated. And yet no, my body wouldn’t play ball. I’d asked a selection of medical professionals what else i could do to get that number up and they had all said there wan’t anything. I like to control things. I like to know that there is some correlation between my actions and the outcomes that impact me. But we all know this is frequently not true and even when it is the correlation is rarely strong. I tried this cycle to do something to take back this sense of control but we can come back to that another time. But really the trick is coming to accept that there will be many things in this process that i cannot control or influence.

The other reason that the treatment delay felt like such a setback was that the day at the chemo suite had been pretty horrible. I’d arrived late and in a fluster due to traffic and was there for 4 hours before i was told i wouldn’t be able to receive treatment. For the first 45 mins of that time i was sat in the waiting room next to a man who spent that time explaining that he’d been “given two months to live” at his last consultation but that that “can’t be right because somebody has to be around to look after my daughter” and that he planned to “just not accept it, if you accept it then it’ll happen but if you don’t it won’t”. All my energy was taken up with focusing on my own situation and emotions and i couldn’t engage meaningfully with him. Others were trying but it was hard. All of us in that room were listeners for his monologue. It was tough for anyone but, selfishly, tougher for an audience who knew they one day could be in his place. He left the waiting room for the chemo suite just before i did. When i went through my nurse gave me the choice of where to sit – two chairs. One next to him. Another next to a woman on the opposite side of the room. I walked to the seat next to the woman and before i’d even sat down i’d been hit by guilt and a little shame that i’d chosen to avoid him. Yes we’re all in this together but sometimes you need to know the limits of what you can give to others and what you need to retain for yourself. At least that’s what i told myself. It didn’t really help.

I sat in that seat for just under two hours while bloods were taken, treatment denied, dressing changed and treatments re-booked. For almost all of that time the woman next to me was vomiting. Between throwing up she spent the rest of the time asking the nurses if they could either do something to make it stop or to give her pain relief to take home with her due to the pain she was in during her cycles. It was grim. The nurses explained that because her bodyweight was so low there was little more they could do to help her with the vomiting but that it “only light” and that she had no other side effects so it was best to proceed. Occasionally she would slump back in her seat, i would look over and we’d briefly hold eye contact. Pushed to action by the guilt of having avoided the man I wondered what i could usefully say or do. But no words came to me.

The final reason was that the delay, though apparently clinically not an issue, was an issue personally. We’d arranged for family to come and stay for the next couple of infusion weekends to help out. That now needed to be rearranged. We’d just booked a weekend away with friends on a ‘good’ weekend. Well with a one week delay that was now a ‘bad’ weekend. This meant cancelling the only tangible thing i had to look forward to. Tough one.

And so i was sat there next to the vomiting & crying lady and opposite waiting room man who was now delivering his speech to a new audience. I was hoping that the nurse would come back and let me have the drugs. The ones that made her beg for help but gave him hope. But no. Go home. Do nothing. Come back later.

A week later i returned. 0.9. The nurse would check with my doctor if it could go ahead. yes it could with a small reduction to two of my drugs so as to allow my number to come back up and get us on track for cycle 3. Great. But there’s a problem – the pharmacy might not have drugs at that volume and concentration in stock. We’ll have to wait and see if they do – it’ll take 30 mins. Are you kidding me? OK, they have it we can get started. Thank you. Huge smile. Never so happy to commit to a week-long handover.

And now we’re a week and a half later. I’m at 1.2. Signed off today for a full whack cycle 3 this Friday. Not even needing a pre-treatment blood test. Woop Woop. What a strange thing to feel elated about.

ps. off of the back of the last blog i received multiple inquiries about the content of my chemo sandwich. I’d like to record that it was a homemade roast chicken, ham and cheese sandwich with salad leaves and a pesto & hummus dressing on seed crusted bread. I call it the ‘middle class aspiration sandwich’. However, for the actual infusion 2 i took left over veggie lasagna. Thank you to everyone for their sandwich suggestions. I will not be listening them.

Today is Day 14 of Cycle 1 which means two things. First, it means that tomorrow, all being well, I’ll be back at Mount Vernon Hospital tomorrow to begin Cycle 2. Second, it means that I have made it through the first Cycle. 16.6% done. So how were those 14 days?

Day 1: Infusion Day

Unless you’ve been in a chemo treatment suite it’s hard to describe the atmosphere. I’m sure they’re not all the same and I’m sure they don’t always feel the way they do on Christmas eve. But that’s all i know. Imagine a ‘seen better days’ church hall filled with recliner armchairs and the constant hum and buzz and whir of medical machinery. Not the nicest place you’ve been but not the worst. warm. Gently lit. For the most part calm. I spent 7 long hours there.

Everyone was very friendly and chatty. A friend who has been through chemo warned me not to worry if the treatment turned me inwards, away from others and focused only on self. I’ve found this to be true. It is hard to look outwards when you are so hyper aware of the things that are going wrong with your body, or could be going wrong, as well as trying to maintain your mental and emotional well being. I can imagine this is true for most people. But not in that room. In that room everyone was on the same side, seeking comfort and solidarity from strangers on the same journey. Everyone smiled as new people walked in, wished those leaving well and chatted as though we were all stuck in a lift together – you don’t want to be there but conversation will pass the time. People exchanged magazines, PICC line tips and compliments on hair loss covering solutions. The mood was hopeful. As i was waiting to go in a man in his late-70s walked out and cheerfully exclaimed to me and the others that “only one more session to go and this bastard on my bone will be done for and i can get back to all that bungee jumping and hang gliding the brochures tell you you’ll be able to do”. Then he threw a scarf around his head, laughed with pure joy and strode out the door.

Most of my time in the room I was consumed with practicalities. How do i plug my iPad in? Can the 80 year old man next to me see the screen? If so, can i still watch the downloaded show that i know has a sex scene in episode 1? what’s the etiquette? How do you do you get to the loo with two pumps on stands attached to you? Why did i drink so much water when i’m also having litres of saline pumped into me?

Beyond those practicalities my main thoughts were: “i feel so young” and “how do i think I’m doing compared to everyone else?”. The former I’m getting used to slowly. Most people there were 30 years older than me. There were three others of similar ages, one close enough to talk to who slept through her time and two too far away but close enough for a held gaze and a supportive nod. Thank you.

It is invidious to compare but how do you not? Nobody i heard ever mentioned ‘what they were in for’. Some people looked worse and some better. But how to know prognosis and treatment plan? Some people were there for an hour and then done. Others, like me were there for hours. What does that mean? Is anyone there on the same treatment as me? how are they doing? how am i doing? Why does my machine beep some times and others don’t? How are some people managing to sleep here? Did i plug my pumps in when i came back from the loo? Be quiet. Don’t worry. None of that matters. You’re all on the same side. let the drugs go in and do their magic. Deep breath. Deep breath. Deep breath.

In the end the 7 hours were relatively uneventful. One of the drugs renders you hyper sensitive to the cold. As that was being infused i went to the loo, where it was slightly colder, and that kicked off some nausea, muscles spasms and paralysis of my throat. All of this had been covered in the many “what to expect…” briefings and so did not feel as dramatic as it my sound. flag down a nurse. tell her what’s happening….”don’t worry, i’ll get you some hot tea, that’ll help”. And help it did. Couldn’t be more British. While i was there two fellow travelers had adverse reactions. One vomiting on the floor then apologizing extensively to a nurse who was matching her apologies for not anticipating and being there with a tray. Again, very British. The other was one of the youth element and was having at least one of the same drugs as me. He had a similar, but i assume stronger, reaction to the cold as i did. Team of staff round him quickly, oxygen mask on, heart rate, blood pressure, doctors not nurses. A stern instruction that he was fine and just needed to breath, that the shortness of breath was just anxiety. Then calm. The doctor letting him know that the effects were worse on second cycle than first as the drugs were infused quicker and that he needed just stay calm. And a final note to him that the pain in his arm was because he had chosen not to have a PICC line. I looked at him, knew that was where i could be in a few weeks and then looked gratefully at the line inserted semi-permanently into my arm.

I arrived home having traveled in a double layer of down jackets, scarf and arctic hat. I was dripping sweat from my brow and went to get changed. Rookie mistake. Big temperature change, light-headed, ashen-faced, retching. Straight in bed with hot tea. Better in 20 mins. Hungry and wanting to see my in laws i went down to the kitchen. The kitchen that’s colder than the rest of the house and has marble floors. With me in thin socks. Wash your hands before dinner i remember. Tap on, hands under – ah it’s ice cold. Light-headed, I’m going to be sick, grab the sink – ah it’s marble and freezing. Now I’ve been sick. Retreat to a warmer room and get under a blanket. Tea. Better in 5 mins. Remind those in the kitchen not to touch my toxic vomit – “don’t worry we weren’t planning on touching it”. Ate three portions of dinner. Winning.

Day 2 & 3

Christmas day with family. Boxing day with family. Both nights the steroids kept me up for hours and hours meaning i didn’t get out of bed until near midday but i still managed to help get Christmas dinner on the table and to watch my children open their presents. Winning. Three portions of Christmas dinner. winning. Splash of wine. Winning. Drove myself to and from the hospital to get unhooked from my take home pump (more on this next time). Winning. Drug tracking via an app, alarms going to to tell me which pill to take when.

Day 4-6

Like a middle of the road hangover after a very dodgy kebab. Nauseated but not being sick. Tired, very tired, but able to function and get out of the house for increasingly long walks each day wearing clothes designed for 20 degrees colder. Bought myself some slippers – apparently a critical ally in the war on cancer. Symptom logging and temperature tracking.

Day 7

The first day of feeling fully human. An outing to a farm with the kids. Obviously shit, but normal levels of shit because it’s fundamentally dull and we’ve been there three dozen times before. Not shit because of chemo. Winning.

Day 8-10

Normal. Sleep pattern slowly coming back to normal after the disruption brought on by the steroids.

Day 11

In for COVID swab and pre-cycle bloods. Very much felt like eyes had turned from Cycle 1 to Cycle 2. Am i ready to do this again? Yes. Home for and honest to God workout in the garden. I felt strong. This was also the day most people went back to work. Not being there i felt sad to be missing out and oddly lonely. I miss my work and the purpose it gives me. I miss my colleagues more.

Day 12

Standard phone call from the oncology team. Hows everything going? Ok, well all those side effects sound pretty standard and acceptable. We can give you this to help with that. Now you know how to deal with that by doing this. One of my bloods is below threshold to start Cycle 2. But the doctor is confident it’s “nothing to worry about”. Bloods are now being taken earlier in the cycle (due to covid) when that bit of the blood count is lowest. She’s confident that when they re-do my bloods on Friday morning we’ll be good to go. This was the first time i felt like i was losing. Despite her reassurance it made me feel like i wasn’t holding up my end of the bargain – they were bringing medical miracles and all i needed to do was generate some white blood cells. Was there anything i could do? No. What if i exercised more? or less? or changed my diet? or slept more? No. Nothing to worry about – just let your body recover. Suddenly the prospect of having to delay Cycle 2 by a week makes me desperate for it, hungry for the poison and the side effects to begins again.

Day 13

A call from my specialist nurse to check in on me. 30 mins chatting. Comforting like an old friend. Yes, still looking at May for surgery but take it one day at a time. One day at a time.

Day 14

Childcare. Family returning home. Making my chemo sandwich and packing my bag. This time I know what i will and won’t need. Fewer books. Less water. A lighter mask. Fewer shows downloaded. Last infusion was the most text messages I’ve ever received in one day. There’s no time to catch up on Netflix when there are so many people to thank for their support. Thank you.

On to Cycle 2 (pending bloods…..)

I haven’t done a truly factual update for you all so far. It hasn’t felt that important and all the medical staff have told me not to worry too much about the details of this bit of my diagnosis or that bit of it. So i haven’t. And to date the journey has primarily been an emotionally and inter-personal one. That changes tomorrow.

For various reasons my treatment plan has changed. There’s been no change in my diagnosis or prognosis – still have cancer and it’s still curable. But my surgeon advised that while he could take the tumour out as it is and it would “probably” be fine, he thought we could do better than “probably”. So to achieve that we’ll do chemo first for three months to shrink the tumour and then remove it. This has the added bonus of getting stronger chemo into me earlier that will mop up any microscopic spread of cancer cells. All good stuff. Yes please. Thank you.

The strangest part of this switcheroo was that i was given a choice about my treatment plan. Chemo first or surgery first. It took me a while to realize the consultant was waiting for me to decide. Through work I’ve made a fair amount of consequential decisions. I think I’m good at decision making but mainly because i’m comfortable taking advice from experts, encouraging challenge and weighing up uncertain risks. So being given a choice on something where i have no experience, expertise or access to underlying information by somebody who had spent a career specializing in exactly the issue and had discussed it with a team of other experts felt a bit unfair (also he was just about to insert quite a large piece of medical equipment up my arse which led me to assess that undermining his judgement might be a poor choice). So i checked. I asked the surgeon what he recommended, asked him what the oncologist recommended and asked my specialist nurse what she recommended. They all said chemo first. I asked if anybody in my position had made a different choice and if so, why. Yes they had, quite a few, mainly because some people were scared of chemo and others just wanted the cancer out. Makes sense. But me, i like experts using empirical evidence to tell me what the best course of action is. So here we are.

Tomorrow, Christmas Eve, is the first of 6, two-week, cycles of a drug cocktail called FOLFOXIRI. My oncologist said that my “reward” for being young, fit, otherwise healthy and, critically, pre-op, was that he could “throw everything at [me]”. Awesome. Cheers. Merry Christmas. Now this isn’t how i saw myself spending my first Christmas back in the UK for 4 years but it’s where we are and actually it a blessing. Badass Chemo = best long-term outcomes. So far we have found the enemy, we have understood its intent and we have formed the best available plan to do it grave damage before it does so to me. But all this is drum roll. Tomorrow we act. The outcomes and collateral damage remain uncertain but are managed effectively. It feels good to be seizing the initiative. Tomorrow, at 1000Z in a drab room in Rickmansworth, we go and we fight.

Oh and also while we’re here. Off the back on my last blog….it turns out people will provide feedback on plenty of stuff if they sniff a chance to do so….or if you call them a “lunatic” in public. But on the upside a lot more people have offered me holidays since then and apologized for not having done so earlier. So we’re rolling in even more offers now. To those of you who haven’t offered us a free holiday yet this is your last chance to do so. After that you’re officially the person who didn’t offer a holiday* to the guy with cancer…Santa won’t like that.

*homemade artwork remains my preference!

Sorry i was on holiday. An actual holiday in the sun at the end of a plane journey and everything. But either side of that i have spent most of the last month dropping the “i’ve got cancer” bomb on unsuspecting friends and colleagues.

I think I’ve gotten better at telling people. I hope i have. It’s not really the type of thing you’re likely to get honest feedback on is it? “Martin you know when you told me you had cancer? well is that really the best you can do?”At first i had grand visions of telling everyone i know face-to-face. Very Hollywood. Not very practical, sustainable or scaleable. So instead i took some good advice from friends and strangers on some cancer blogs and changed the plan. I asked family to pass on the news initially to other family members and then wrote a standardized message that allowed me to copy and paste. First lesson in being kind to myself.

Telling everyone took me a long time. Each bomb drop was draining. I previously spent some time living and working in Iraq and Afghanistan. I almost never felt in any danger. You’d be wonderfully well looked after. Lots of protective measures. Lots of rules and guidelines to keep you safe. Lots of skilled men with guns and armored vehicles. i felt immensely cared for and safe. But then there’s this moment where you realize you need the protection because some really not very nice people (certified wrong ‘uns in fact) would very much like to kill you. There is something about being cared for and supported that reminds you that you need caring for and supporting. Each time i told a new group of people the care and support and love was both perfect and a very stark and repeated reminder that a new wrong ‘un wishes me harm.

Having gotten through the first few waves of telling people I then hit the phase others told me about where word just gets around and people start messaging you saying they’ve heard. And now we’re in the phase where most people know but i still bump into folks who don’t. The friend who you missed off a group message who tries to setup a catch up drink next year. The mentee who books in a mentoring session. The old boss who invites you to a catch up with mutual former colleague who’s lived with cancer for years….you’ll never guess what Tony….

So here we are. I’ve got my patter down good. But my side of it has been pretty dull. Contrary to popular opinion i get very quickly bored of the sound of my own voice. What has been fascinating has been the range and variety of people’s responses. Now this has not been a controlled experiment but i think there’s some trends.

Some things have been pretty common. Almost every response has covered the three core ingredients of (a) this is shit (b) i’m sorry for you and (c) let me know i there’s anything i can do to help. Good stuff. (a) yes it is. (b) thanks, me too. (c) i don’t know but i’ll let you know when there is – because there will be something. All of that was kind of expected….or it’s what i would say if the news were coming the other way. But some of you had more flair than that.

• I’ve had 6 holiday offers. All deeply appreciated and yes, we will be taking advantage of all of them. Farm on an island in Oslo is the current offer to beat.
• So many people have a personal link to cancer. somebody i know well turns out to be a secret cancer survivor. Lots of offers to link me into other members of the club nobody wants to be in.
• Three people immediately called me as the message arrived. Called! Like it was the actual 1990s. One of them videocalled like a maniac. For each of them it worked. It certainly felt natural and was welcome. I think the correlation was that each of them is an arch extrovert. I really respected the presence and confidence they each showed.
• The second person i told face-to-face checked my immune system was ok and then gave me a hug. It was very touching.
• One person typed and retyped their reply for almost an hour as i watched their whatsapp status change. in the end their reply was three lines. i imagined their struggle to find the words and was so grateful for how hard they’d tried.

I’m sure there are people out there i haven’t told yet. But it certainly feels as though this phase is over. i am now official the cancer guy. And that’s fine. But i don’t plan on being him forever. Onward to treatment…

There were 12 days between being told I had cancer and being given a prognosis. What do you do in those 12 never-ending days?

Immediately everything else mattered only in proportion to the news that will soon come. And how can anything else compare to the biggest news of your life? But you have no agency over that news. That die is cast, bouncing it’s way along the table as you consider each face’s consequence. So nothing in those 12 days felt as though it really mattered. Mundane tasks found me during the day and sleep escaped me at night. I walked and ran. I was scanned and tested.

And then some friends who have lived with cancer made two suggestions. One was to write this blog. The other was to break the news to people in writing to lessen the emotional burden on myself and to allow others to process the news at their own pace. So I drafted that message. Most of you reading now will have received it.

I’ve spent much of my career writing. Trying to capture the nub of a complex issue with as much clarity and brevity as the pace of events will allow. Or attempting to record the nuance and humanity of meeting for an audience thousands of miles away. Allowing that distant reader to feel the warmth of the room as well as grasp the cold facts. So a long text message was, for the most part, easy to write. Give people a scene setting warning. Give them an unequivocal statement of the facts. Tell them what the future holds. Ask of them what you need. Tell them where to go for more information. Allow them space to respond. Top notch civil service drafting. Sir Humphrey would be proud.

And so I began. The words were there easily for me until the the paragraph about what the future held. You see I didn’t know. The die was still rolling. I wanted to write the message before the diagnosis – one less thing to worry about afterwards. And so I drafted two versions of that paragraph. The first explaining that the prognosis was good and that I was likely to recover and a second saying I was not. They sat their in the draft under the simple sub-headings [good news] and [bad news] waiting for one to be deleted and the other to be my new reality. And for 12 days life was that simple.

Now of course it’s not actually that clean cut. We knew that as we walked into the meeting with the consultant. We’d sat in the car beforehand and reminded ourselves that it was just the first turn on a long journey. An important one but not the only one. If it were good news there would undoubtedly be things that went wrong along the way. If it were bad news not every day would be bad. But black and white was easier to deal with and in fact i dealt only with black. I somehow knew that the prognosis would be bad. The cancer would’ve spread and would be incurable. Treatment would be aimed not at cure but at managing symptoms and time. Dealing with those 12 days seemed easier without hope. I made a list of targets to survive for. Could I get to my younger son’s first day at school? My tenth wedding anniversary? To the age at which my father ‘died young’? The emotion of this was too big to fit in me and so this process of charting my mortality was very matter of fact and devoid of any great feeling.

But then, as you of course know, I deleted that paragraph. The consultant’s words are a blur but they included “no spread”, “local cancer” and “curative treatment plan”. We started crying and he left us with the nurse for a while. He talked and explained what would happen next and that the plan was to cure me and that there was no reason I shouldn’t have a normal life expectancy. We hadn’t planned for hope and didn’t know what to do. We felt as though we should be popping champagne and yet knew so much uncertainty remained and so many difficult days were clearly ahead of us. We went for a walk under blue skies and sunshine.

At home and I sat in the garden. I pulled up the draft of that message you received, selected all of [bad news] and deleted it. For now that future is gone. For now the first turn on a long road has been a good one and for now the future remains happy and hopeful.

Hi, i’m Martin. Nice to see you again. I’ve got cancer.

Sorry to throw that at you before we’ve shaken hands and sat down but i haven’t yet found a better way to tell people and it’s easier once it’s out there. Otherwise we’re going to have some wonderfully British chit-chat and then, well it’s still going to be just as awkward. There’s no easy way to tell you it is there?

So what are we doing here? Well, in truth I’m not sure. It has been 8 days since life changed for me and my family. It’ll be 1 more day until we know how much it has changed. Each of these days has been a spectacular series of cliches. Numbness, anger, disbelief, anxiety. All mixed in with the mundane acts of every day life continuing – yes, your life might’ve been turned upside down by cancer but that new Ikea furniture isn’t going to build itself is it? More than anything though I’ve just been so sad. Does that sound too banal? Maybe. I know lots of words but i think that’s the one. Sad. Just so sad that this has happened to me, has happened to my wife, has happened to my children and has happened to my family and friends. This sadness has been so overwhelming I need to put it somewhere. This is where I’m putting it.

Beyond being sad the last 8 days have mainly been functional. Calls with nurses. Appointment bookings. Scans. Blood tests. Calls with HR. None of this really matters, I’ll tell you later. But what it all adds up to is that we know I have bowel cancer but don’t know until later this week what the full diagnosis is and what the future holds. There are so many unknowns. Such a wide range of possibilities. I’ve worried that if I tell anyone just yet they’ll ask questions I don’t have answers to and, though meaning well, just remind me how anxious I currently am. So I’ve told very few people. If you’re reading this just after I told you I hope you understand why I waited.

Those I’ve told have been perfect. I could not have asked more from my wife and mum. Nor could I have asked more of the colleague who’s lived with cancer for a decade who I called out of the blue and in a bit of a state. Couldn’t have asked more of the two people from school I’ve not spoken to in 20 years but who’ve both had bowel cancer. The phone notifications when you replied meant more than you’ll known. And i couldn’t have asked more of my oldest friends I called and told. You made a horrible call into something life affirming. I am incredibly grateful to everyone. It gives me strength to know that I’m not alone and that whatever the future holds you’ll be there with me.

Where next? Well we’ll walk in that room and find out. It’s as though last week on an overcast morning in Hemel Hempstead I was convicted of a crime I did not commit. This week, on what i presume will be an equally grey and ordinary day, we’ll find out the sentence. No chance to make my case. No leniency for good behaviour. No appeals.

And so here we are. If you’ll humour a sentimental young fool for a while I’ll tell you my story. I can’t tell you where it will go. I can’t promise you it will be a happy story, it probably won’t be. I can’t promise you there’ll be a happy ending but I hope there will be, and you can hope with me.