You and Your F**king Cancer…

Of course any support in times of crisis is crucial, but that’s particularly true when it comes to one’s spouse.  The problem is that with each relapse and each round of chemotherapy what I can only describe as ‘cancer fatigue’ has set in.  My feeble cough, followed by a weak look in the desperate hope of some small flicker of sympathy now serves only to antagonise.   Admittedly this might be something to do with the timing.  The cough only seems to come on within seconds of being asked to do something.  I haven’t asked my consultant about this, but then I forgot to ask him whether I’d need another bone marrow biopsy yesterday.  Funny that.  Sometimes it’s nice to collapse into the loving embrace of denial.

So, the phoney war is almost over.  The Nivolumab has done the trick.  The final session is at the Churchill on Friday and undoubtedly the team there will be bidding me an emotional farewell.  I have a date of 12th October for hospital admission and 21st October for the donor transplant, which will happen after 9 days of conditioning chemo.  I spent yesterday having heart and lung tests to see if my body can take the punishment and also to provide a set of base line readings that the medical team can use should I encounter any unforeseen problems during the transplant process.  My sister, who is kindly donating her cells to me, had a similar series of tests today to ensure that she has a clean bill of health.  Pending final blood test results, we’ve both passed and the route is now clear for us to get on with the fun part.  For my sister that means having her cells harvested and for me that means 5 to 6 weeks of incarceration while the medical team keep infections at bay and manage the progress of my new immune system.  This will be followed by many months of recovery and probably an awful lot of whining and, finally, wondering where my wife has gone and whether she’s taken the joint credit card.

I have now signed the consent forms, so there is no turning back.  As I may have mentioned in a previous blog there is, in theory, a choice at this stage.  I have no ‘avid cancer’ in my body now, so am technically in remission, could carry on without the transplant and hope not to relapse again or I could go for a cure now.  The ‘cure now’ path consists of the transplant and while the reward is getting rid of the cancer once and for all the risks are that the treatment itself could be fatal.  The two key dangers are infection, due to having little or no immune system, or graft versus host disease where the donor cells take something of a dislike to the ‘host’ body’s organs.  It’s always slightly sobering to be presented with mortality rates, but we’ve admirably dealt with that by ensuring that we’re ‘unsobered’ not long afterwards.  Perhaps it’s the vinotherapy, rather than the Nivolumab that has put the Hodgkin’s to the sword?

So, Katie and I are facing the next 6 months or so with a kind of grim determination.  It’s going to be rough, there’s not doubt about that.  The autograft I had in 2010 was the most physically difficult thing I’ve ever had to deal with and a good deal of the conversation with doctors and nurses over the past month or so has served to underline the fact that the allograft will be a more difficult experience and will involve a much longer recovery period.  This is partly due to the three month course of immune suppressants post-transplant that will keep the incoming immune system in check.  There are some cool bits – I’ll be in a pressurised room, so I can spend the entire time in hospital pretending I’m in a space station, an illusion helped, no doubt, by the fact that I’ll be on a mainly liquid diet after a couple of weeks of chemical bombardment.  The pressure maintained in the room stops the air whooshing in when the windows and doors are opened, hopefully keeping any nasty bugs at bay.  I requested a room with a view this time, which at least raised a smile by the doctor.

So, my lovely wife will at least get 5 or 6 weeks off while I bitch and moan and thrash about on a plastic mattress in Oxford and generally drive the nurses round the bend.  I’m not sure whether I’ll be capable of writing too much while I’m banged up, so in the words of Jim Lovell before Apollo 8 disappeared behind the moon for the first time, “See you on the other side” (I mean after the transplant of course….nothing more metaphysical than that).

What can a chocolate mousse tell us about a stem cell transplant?

About 10 years ago a group of us were having dinner at a friend’s house.  For dessert we were each served a very nice chocolate mousse in a glass.  About half way through the course there was a pause as somebody (they know who they are) remarked, in a slightly unkind tone, how odd it was that everybody had eaten their mousse in one way, but my sister Kirsten and I had done something entirely different.  Everybody else had worked their way methodically down their pudding whereas my sister and I had created a kind of mine shaft through the mousse in a  frantic dash to the bottom of the glass.  Everybody else’s sweet approach had been horizontal, whereas my sister and I had taken the vertical route.  This raised the question: was this nature, nurture, torture or just pure greed?  I don’t think seconds were available so we were wasting our time if we thought that our mousse devouring was going to lead to a second glass and I’m not even sure there’s any evidence to suggest that the quickest way to eat mousse is to tunnel through it.  So many unanswered questions….

It seems relevant at the moment, because I’m in the fortunate position of having a sibling who’s a tissue match for my stem cell transplant.  The chances of having a sibling match are only one in four, so I’ve been rather lucky (only having one sibling) and having the familial cells improves my chances of survival somewhat.

Back in the present I’ve just had number 8 out of the original 9 Nivolumab chemo sessions and all continues to go according to plan.  Last week Katie, my wife, and I had our first consultation with the stem cell transplant team.  That was a sobering, but still positive, experience.  We were offered a choice of treatment going forward, which really represented no choice at all: carry on with the current chemo in the hope that it will hold the cancer at bay or go for the allograft stem cell transplant, which carries a degree of risk, but offers a cure.  I can’t escape the fact, no matter how small the chances are, that I might not even make it through the treatment.  And yet, I’m so convinced I’ll beat this that I don’t really dwell on mortality or statistics.  In fact, a week on from the consultation my main concerns are 1. How quickly can I get back to work?  2. Can I beat the marker for getting back to work set down by previous patients? (Which is admittedly tragically competitive, but there you go, you need targets.) and 3. I’ve got to have another bloody bone marrow biopsy – not a particularly nice experience.  The only real emotion I showed in the consultation was in response to the news regarding the biopsy.  A response which could be regarded as cowardly or a bit moany.  Katie’s view that ‘in the wider scheme of things’ it actually isn’t that big a deal is probably correct.  The fact that I was hobbling around for about 4 days after the last one and had to drive home with a dead arse are, perhaps, beside the point when you’re engaged in a battle for your very existence.

The consultant and technical nurse were both great, communicated clearly and were very considerate and approachable.  Nothing got sugar-coated, which was fine by me.  If the PET Scan shows a continued good response to the Nivolumab and I pass a series of medical tests then we have a green light for the stem cell transplant, sometime in the late Autumn.  The medics have burst my bubble a couple of times in the past week.  As I’m over 40 I’ll probably be having the geriatric lower dosage chemo before the stem cell transplant rather than the young, hip high dosage stuff (presumably you only get that if you have a beard and live in Hoxton and are quite a way short of your 40th birthday).  It turns out that my weight gain, which I was quite pleased by as it represented a bit of a return to normality and some kind of evidence that the treatment was working, has sort of floated past the ‘normality’ stage to the ‘if-it-carries-on-we’ll-need-to-up-your-dosage-you-fat-bastard’ point.

My sister will be seen by a separate team for ethical reasons and, if she’s ok with everything, we can get on with getting cured.  I’ll be in hospital for 5 or 6 weeks (which will be a nice break for Katie – every dark cloud….) and will have weekly follow up appointments for 3 months afterwards.  The key difference to the autograft is the threat of graft versus host disease, which is a result of ‘foreign cells’ not reacting very well with the host’s organs.  Graft versus host disease can be fatal and to keep it at bay the doctors will administer immune suppressants for three months after the transplant.  After that it’ll just be a case of getting back to normal as quickly as possible.

And that’s where the chocolate mousse tests comes in.  According to the consultant a sibling match works at a deeper level than just the tissue level.  Unofficially I’m calling this the ‘Pudding Stratum’ and will be writing something for the Lancet once all of the dull chemical stuff is out of the way.  After all, if we wield a spoon the same way and like to inhale our chocolate desserts then we must be pretty similar and that can only be a good thing.

Fighting Back? Nivolumab does the trick.

The broadcaster and author Danny Baker never bought into the idea that you battle cancer, “You are the battleground. You are the Normandy Beach. You are the Hastings in 1066. You don’t fight it. It’s nice if that helps you. You don’t battle it. You’re helpless. Science is fighting it”.  Of course, it’s pretty easy to see where he’s coming from.  Without the drugs and physicians the outlook would have been bleak indeed and there are plenty of cancer sufferers and cancer survivors who dislike the metaphor that treatment is a ‘battle’.  What does that say about the thousands of people who don’t make it?  Didn’t they fight hard enough?

But I don’t agree with Danny Baker and it’s not just because he has an unfortunate taste in football teams.  His quote seems to suggest that the patient is entirely passive, that you lay there and let the doctors do their stuff.  I think that’s unhelpful.  A dialogue with your medical team is essential, it can make fundamental differences to the treatment you’re given and the way that it’s administered.  You certainly shouldn’t feel ‘helpless’.  However, I never entirely bought the pitched ‘battle’ idea either as it suggests a highly strung, taut, stressful approach to treatment, when it’s important to stay as relaxed and patient as possible.  People who know me well will tell you that being ‘patient’ and ‘relaxed’ aren’t two of my strong points.

If there are pugilistic images I have kept playing in my mind over the years, in relation to chemo, they have been of Muhammad  Ali’s fight with George Foreman – the Rumble in the Jungle.  Ali famously soaked up 7 rounds of punishment before coming out swinging in the 8th to regain his heavyweight title.  That’s how I feel about cancer.  You don’t fight it, you outlast it, you let it blow itself out and come out swinging.  It’s more siege than open warfare.

And yet, a day after receiving a really encouraging scan result, it was Churchill’s words after the defeat of Rommel in North Africa that sprung to mind, so maybe there are times when only a quotation borne out of a military victory will do:

“This is not the end. It is not even the beginning of the end. But it is, perhaps, the end of the beginning.”

After the multiple shocks of realising that I might be ill again, the blood test results, the scans, the diagnosis and the commencement of chemotherapy to hear that the cancer had reduced by 80 percent was the first good news in months and felt like the turning of the tide.  I now have very little of the disease on board and, hopefully, the rest will be mopped up before the stem cell transplant.  So with apologies to my own sense of logic and to Danny Baker, this was my El Alamein.

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.