Don’t Press The Orange Button

There’s that moment at the end of Charlie and the Chocolate Factory when Willy Wonka presses a button in the Great Glass Elevator that he’s never pressed before.  The button, in the book at least, is labelled “Up and Out” and it sends the Elevator through the roof of the Wonka factory and into the wild blue yonder.  There are two things in common with Dahl’s scene and a stem cell transplant: You get some buttons to press and there’s an awful lot of “up and out”, but that usually happens just after mealtime or when they’ve just administered vancomycin – a lethal antibiotic that turns your insides to liquid and can make you hallucinate.  Sadly, I only endured the former and never got to enjoy watching a Roman Legion marching through the ward or imagining that Palace had won the Champions League.

I’ve spoken to a few people over the years who have been through a stem cell transplant and their experiences have varied widely.  I know one lady who nearly died during the procedure and was only saved by a resourceful and quick-witted consultant and I’ve spoken to other people who’ve breezed their way through it.  My experience was worse than some, but better than many others.  It was, however, sufficiently harrowing that I anticipate my next one, which is scheduled for the Autumn, with a certain amount of dread.  I would assume that’s only natural.  Were I looking forward to it then beating cancer wouldn’t be my only problem as I’d presumably have lost my marbles as well.

There are a few things to look forward to.  I set a personal best of 24 days in hospital for the last one, so I’m aiming to beat that.  If I survive to day 25 I’m sure the medical staff will join me for a small celebration.  The best way to describe how dire I felt at the lowest ebb was the time I soiled the bed and felt not the merest iota of embarrassment.  My only thought was, “Right, I suppose I have to move now”.  Even then I was in two minds.  Laying in my own crap was much less effort than getting vertical, cleaning myself off and changing into fresh pyjamas.

In fact, embarrassment, reserve or that desire not to create a fuss – let’s call it “Essential Britishness” proved to be, if not almost fatal, then at least pretty dangerous.  The “salvage chemo”, which was administered over 5 days, is designed to destroy as much of the immune system as it can without killing the patient.  The result, for me, was wave after wave of what felt like Biblical plagues with one side effect being a very raw digestive tract.  For a few days I was fed through a tube, which was great as it took the stress out of eating, an exercise usually followed by throwing up a few minutes later.  I knew I had to keep trying to eat to help my body to fight off infection, but eating was an ordeal.  Hospital food is pretty bad at the best of times, but at the worst…well stick a tube down my nose and feed me that way please doc.  The problem was that after they’d wheeled in the vancomycin one evening I was sick (par for the course) so violently that I managed to throw up my feeding tube along with everything else in my stomach.

Now, there aren’t as many buttons in a standard hospital room as there were in Willy Wonka’s lift, but you do get a bit of a choice.  As I sweated, gripped the cold porcelain sink and choked on the tube that should have been in my stomach, but was now hanging out of my mouth I was faced with a stark choice: Press the standard orange call button and wait for a few minutes for a passing nurse to turn up at his or her leisure, or press the red emergency button and wait for the cavalry.  For a few seconds I actually had the thought, “Oh, I don’t want to be any trouble”, before coming to my senses and pushing the red emergency button…I had a whole team of people in my room within seconds.  Cancer didn’t kill me that time, but politeness almost did.

Back in the present we are on cycle 5 out of 9 of the Nivolumab trial and it’s been pretty good so far.  In fact, I’m a little worried that I’ll turn up for the stem cell transplant feeling out of practice.  I have hair, my skin isn’t grey, my tastebuds are almost totally unaffected and I’m not 2 stone overweight.  In fact, there’s a slight hint of disappointment in people’s voices when they see me and say, “well, you’re looking well”.  With a bit of luck it’s working, but we won’t know until after the CT scan in a couple of weeks time…

Dr Chris Hatton: The Man, the Legend.

As a general rule they like to stick to their code of omertà in the medical profession.  It’s extremely rare to hear one doctor making much comment about another: either positive or negative.  The only time I ever encountered any such ‘sharing’ I was having my Hickman line removed after completing my autograft stem cell treatment.  The radiologist performing the procedure spoke fondly of Chris Hatton, the consultant who oversaw my stem cell transplant.  He recalled a time that Chris had managed to walk out of a hospital wearing not only somebody else’s jacket, but a jacket that was about 2 sizes t00 small and wasn’t even the same colour as his suit.  Maybe I’ve embellished the details slightly over time, or maybe the chemicals have scrambled my brain, but I’m pretty sure that the gist of the story’s about right.  The anecdote was, however, prefaced by the radiologist relaying just how gifted a physician Chris Hatton is and just how highly he thought of him.  I think one expression he used was, “…brain the size of a planet”. And that was pretty much my experience.  Chris wasn’t somebody you could rely on to get to an appointment on time or necessarily have a 100% grip of his admin, but he had a fantastic gift for making you feel comfortable and ensuring you had an iron clad grasp of precisely what the treatment entailed. We met for the first time at the Churhill Hospital in Oxford.  I was pretty certain that I’d relapsed.  The biopsy route to a diagnosis had been abandoned and I’d gone straight to a PET scan to try and establish what, if anything, was going on.  My wife and I sat in the waiting room for a good while wondering if Chris was going to turn up.  I was almost at the point of abandoning ship and fooling myself into another day of cancer free life, or one more night of living in hope rather than expectation, when Chris finally appeared. The consultation started with some unintentional comedy.  I felt more like I was sitting opposite Chris Tarrant than a haematology consultant as Chris teased out the details of the diagnosis: “The scans are good” (Fantastic) “Better than I was expecting” (Brilliant, where’s the champagne?) “But, we’ve still got some work to do” (Ah, bollocks) It took an hour to outline the treatment plan for my relapsed Hodgkin’s.  Chris even wrote down a free hand sketch of a schedule that we could take away.  It was very simple – one side of  A4 with rough timings – but it was extremely useful, particularly in explaining the ins and outs to friends and parents.   I probably could have done without the exclamation mark after ‘Oxford – Stem Cell Transplant 28 days!’, but really that would be splitting hairs.  That was the abiding memory of the consultation though, ‘how bad is a chemo regime that you’re in hospital for a month?’.  The mind boggled. Fast forward to my follow-up consultation after the stem cell transplant and a PET scan to see if everything had worked.  My wife and I were sitting in the waiting room with another chap when Dr Hatton breezed in.  He looked confused, “Ah, I’m seeing you this morning Andrew and, oh, David you’re here too”.  Pauses for effect, “erm Andrew, if you don’t mind I’ll see David first as you’ll take longer”.  My face must have been a picture, because he immediately followed up with, “There’s nothing to worry about”.  I just about managed to scrape myself off the carpet and regain some kind of composure before we went in to discuss the PET scan results.

Round 2 – the Arsenal of Hodgkin’s

Having cancer and enduring relapses is a bit like living through a cup competition.  With each round the competition gets that bit tougher.  In football terms it’s like starting with Brighton and Hove Albion (or “Brighton and Herb Albion” as my mother once frantically wrote trying to make a note of an FA Cup draw on Radio 2 for me sometime in the early 80’s), going on to play Arsenal and then ending up having to beat Barcelona.

My first relapse didn’t feel like too much of a shock simply because it came so quickly after Brighton had been despatched in round one (might as well really stretch this metaphor).  I finished ABVD in the Spring of 2009 and by the summer the symptoms were back and a stiffer challenge lay in wait.  The symptoms were pretty innocuous – my legs were really itchy.  The only pain I encountered was from occasionally banging my head on the desk at work when I bent down to scratch them (I’m really not kidding).

So, it was time for another round of investigations.  I went back to the same surgeon who’d done the initial biopsy and he wasn’t too keen to start poking about in the area at the base of my neck where the Hodgkin’s had reappeared: “I’m not going down there, it’s tiger country”.  It reminded me a of a conversation we’d had after the first, failed biopsy, when all this kicked off.  I never really got a full explanation of the ‘dead end’ that they came to in my chest where bits seemed to be fused together that shouldn’t have been, like overdone lasagna welded to an oven dish.

Eventually CT and PET scans confirmed the diagnosis that the cancer was back.  This time the hospital in Slough referred me on to the Churchill in Oxford, where I would mean the legend that is Dr Chris Hatton and face, appropriately enough for the “Arsenal” of Hodgkin’s, the heavy artillery.

PICC and Mix and Tricky Ablutions

There’s no doubt that having a PICC line inserted for delivery of the ABVD made life easier for both blood tests and for administering the chemo.

The NHS website describes a PICC far better than I could:

PICC line is a long, thin, flexible tube known as a catheter. It is inserted into one of the large veins of the arm near the bend of the elbow. It is then threaded into the vein until the tip sits in a large vein just above the heart.

The line sat discretely under my arm and, to be honest, most of the time I forgot it was there.  The only practical issues to deal with were the fact that the line had to be cleaned and flushed every week to control infection and I had to be very careful showering to avoid getting the point of entry wet.

I had to shower with what my IV nurse described as an ‘elephant’s condom’ over my arm – a long clear plastic glove which encased my arm right up to the shoulder.  This led to an awful lot of soap and shower gel juggling incidents as it’s very difficult go grip anything with a wet, plastic mitten.  In fact I’m surprised I survived ABVD, not because I wasn’t expecting the chemo to work,  more that the diving, sudsy grabs for a bottle of “Happy Hippy” shower gel didn’t result in a concussed, drowning heap in the bathtub as I clattered off the shower screen and slipped down the tiles and towards the plughole.

The elephant’s condom was just one more thing to remember when we went anywhere to stay.  Unfortunately I wasn’t always successful.  The most memorable occasion came at a luxury hotel down in Winchester (‘treat yourself while you can’ was our motto).  Realising that my shower sleeve was still sitting in a bathroom in Berkshire I had to go to plan b.

I realised afterwards that I’d missed a comic trick when I went down to reception and asked them, ‘if they had any cling film?’.  I don’t know what else they had under the desk, but the beauty of that kind of hotel is that they cater for all needs and a roll of cling film was produced without question.  What a classically British exchange that was: No explanation was sought and none was proffered.

My only regret now is that I hadn’t done this (on the assumption of course that even a well stocked hotel reception couldn’t stretch to holding unlimited pharmaceutical items):

“I don’t suppose you have any condoms do you?”

“Erm, no sir.”

Pause for comedic effect.

“Ah….do you have any cling film?”

No change in expression:

“Yes sir, here you are.  Just return it in the morning.”

Eventually I managed to have a reasonable shower with my arm wrapped in cling film.  At least I was guaranteed to stay fresh.

ABVD – The War of Attrition

So, the clock winds back to the Autumn of 2008 and my first experience of being part of a chemistry experiment.  I had no real idea of what chemotherapy involved, how it was administered or how it worked.  All I knew was that it made you feel sick.  Ironically, I’ve never felt ill with Hodgkin’s, it’s only the treatment that’s made me feel poorly.

The first surprise was the length of the ABVD regimen.  I thought 6 to 8 ‘cycles’ would take a matter of weeks, so I was gobsmacked when that translated into 6, or even 8 months.

I was very fortunate to be treated by the team at the Eden Unit at Wexham Park in Slough, a hospital that gets a bad press for a variety of reasons, but was and is a first class establishment in my eyes – at least from my experience of its cancer care.  A lesson I had to learn very early on was the need to be patient…there’s a reason we’re called that after all.  I got to treatment number 4 of a potential 16 part cycle and felt great that we (“we”, because it’s a team effort after all) were a quarter of the way through.  Two weeks later I felt down that we were only at treatment 5 – it didn’t feel like much of a milestone at all.  The next 7 months of fortnightly visits to Slough stretched out like an interminable chemical desert.

Eventually I got into a rhythm with the chemo.  I’d go into Wexham on a Friday morning feeling 36 years old and leave 4 hours later, feeling about 76.  I was lucky that the ABVD gave me no really difficult side effects to deal with and I was usually back at work by Wednesday of the following week.  Fortunately, my fast paced, thrill a minute roller coaster ride of a job as an accountant in Bracknell always gave me something to look forward to.  I just couldn’t wait to get back (but I’ll talk about work some other time).

I remember being in B&Q the Saturday morning after my first treatment lugging tiles around and thinking something along the lines of, ‘this is going to be a piece of cake’.  Sunday passed in a similar vein, but then Monday arrived…. .   After most chemo sessions they send you home with a party bag of drugs to try and counteract the various side effects.  The steroids I was taking kept me perky for a couple of days immediately following treatment, but that was followed by a slide into flu or hangover like symptoms for a couple of days afterwards.  The pattern repeated itself with Groundhog day-esque predicability until the treatment finished.

That was the toughest aspect of ABVD – simply the monotony of it, the routine.  The post chemo bounce back to feeling human again got a little lower each time, so each time I was getting that bit more worn down.  It was partly patience, letting go of that need to rush through and taking each day as it came that helped me get through.  You learn, very quickly, when having treatment how you have to change your own mindset, choose your mood and just take it as much as you can in your stride.  It isn’t always easy – in fact there are occasions when it’s been impossible.  I’m sure even the most positive minded people have had days when they’re just feeling too ill or too angry to distance themselves from their treatment and see the light at the end of the tunnel.  Fortunately you soon learn that those moments pass.

After 6 months the scans looked good and it was a cause of some celebration when they removed my PICC line and told me that I didn’t need the remaining 4 cycles or 8 sessions of chemo.

Unfortunately, it turned out to be a brief reprieve.  ABVD had been merely an aperitif before the main course, a skirmish before full blown hostilities….

How did we get here?

I never had the big Hollywood, “Mr Phillips, you’ve got cancer moment”.  Each time  there seem to be a slow inexorable drift towards a diagnosis like the grinding, shifting, descending of tectonic plates.  The lump on my neck, which the GP’s at Binfield Surgery in Berkshire took it in turns to ignore, eventually led to a referral to a Haematologist in Windsor.  This was after I’d casually mentioned it again during a GP consultation for tennis elbow – thank God my guitar playing was so inept that it was causing physical disfigurement as well as aural pain.  Even then, the haematologist wasn’t impressed with the lump and Hodgkins wasn’t really mentioned until we got deeper into the process.  The scan that followed was precautionary and the feeling at the time was that this was ‘nothing serious’.

There have been numerous moments of dark, unintentional comedy along the way.  Perhaps the first was receiving a voicemail before dawn in a New York hotel room.  In a nutshell the voicemail from the consultant said something like, “There’s a problem with the scan, but I’m off to Australia so see you in 3 weeks”.  Well, what the hell did that mean?

There followed a CT scan, PET (I think), one unsuccessful and one successful biopsy operation at Harefield and we eventually stumbled to a diagnosis around the time of the Beijing Olympics.  I say this, not because it curtailed my plans to compete, more that it’s a useful temporal landmark.

The surgeon called me at home: “It’s Hodgkins, but at least it’s not something more horrible”.  “Well”, I thought, “Thank Goodness for that”.  It seemed at least, pretty horrible to me at the time.  And so we embarked upon our first voyage into sometimes choppy chemical seas.  The first chemo was a 6 month course of ABVD, but more of that anon…

Day 1 +1, Part One

Well, it took around 2 months to get here….from that moment I stepped off the scales and thought ‘shit’, or something even less polite than that, to the first visit to the Churchill Hospital in Oxford for another crack at curing Hodgkins.  A routine visit to the gp quickly snowballed into something more sinister (not a particularly evil looking snowman – sentence two and I’m already mangling my metaphors – maybe we’ll put that down to the chemicals) and here I am now a day after the first round of chemo feeling dazed, but not debilitated.

I’d often wondered what a relapse would feel like so long after the end of my last treatment.  I’d speculated that it would feel like a significantly crueller blow than my first relapse which came quite quickly after the first round of treatment had finished.  It turns out I was right.  It wasn’t a whole lot of fun.  My wife and I dealt with it in a stoical British manner, by eating out a lot and drinking as much decent wine as humanly possible.  I don’t know that the’s the recommended approach and I’m sure you won’t see that many articles in the Lancet on using 300 gallons of Rioja, Malbec and Sauvignon Blanc to take the edge off before the chemical onslaught, but then neither of my consultants seemed to discourage it.