It’s the Hope that Kills You.

It seems an appropriate cliché to use four days before Crystal Palace take on Manchester United in the FA Cup Final.  It’s also apposite in describing the interminable wait for a scan result, particularly when there’s so much at stake.

It’s been a long time since I’ve updated the blog, largely because there’s not been an awful lot to report.  I’ve felt reasonably well, the blood counts have remained – until very recently – stubbornly low and each week has passed much like the last albeit with a slight improvement in how I’ve been feeling.  It’s never taken a scan or biopsy to tell me that that there’s a problem, I’ve always known and the results have merely confirmed it.

After an allograft precautionary PET CT scans are scheduled at three months intervals.  Given that you get a year’s worth of radiation in about an hour and a half this isn’t taken lightly and illustrates the need to monitor any chance of the Hodgkin’s returning.  My last scan was about three weeks ago and it was something of a shock to find out that it showed some enlarged nodes on the left hand side of my neck.  Now, that wasn’t necessarily confirmation that the cancer had returned, but the scan needed to go to a multi-disciplinary team meeting to be analysed alongside previous scans and my medical records.

I’d wandered into the consultation with my hat metaphorically on the side of my head, a song in my heart and a smile on my face.  I had had no symptoms or any inkling that a relapse had happened.  The only slight doubt that crept into mind was after the pre-consultaton weigh-in when it turned out that I’d somehow lost a couple of kilos in weight.  It was weight loss that had been a symptom at both my initial diagnosis and my first relapse.  Even so, to be told that there might be a problem with the scan was a bolt out of the blue.  The assault was complete, when already bent double from the news of the scan,the coup de grâce came with a knee to the face in the shape of an updated chimerism (percentage of my sister’s white cells in my bloodstream) score.

Now, the point of the last year or so’s worth of treatment has been two-fold: First, get rid of the cancer.  Second, make sure the graft of my sister’s cells is successful.  I’d been told a couple of months ago that the chimerism was 100%.  At that point I’d almost stopped thinking about chimerism as, in my mind, it was a case of ‘job done’.  So, when the consultant said that 100% was a rogue figure and that the score was actually 32% my day was complete.  I’m slightly surprised I wasn’t mugged on my way back to the car.

I was left with the prospect of a chimerism re-test which would take three weeks to turn round and a scan review which wouldn’t happen for another week.  I’m not a particularly patient patient at the best of times, but there was something familiar about the excruciating wait for news.  If the cancer returns there are a few more things we can try, but a relapse would hardly be ideal.  At this point my wife did what all sensible spouses would do and went on holiday to Venice with her family leaving me to nurse my neuroses.

The doctor called me on Thursday afternoon, but I missed her and it wasn’t until the Friday morning, nine days after the bruising consultation that I spoke to Lara (one of the technical nurses and an absolute star) who told me that the medical team were happy that the scan was clear.  To say I was extremely relieved is obviously an understatement, but in a sense it would have been a different kind of relief to know the cancer had returned.  I realise that sounds absurd,  but some news is better than no news and it’s that awful limbo of not knowing how the next few months or years are going to look that’s psychologically as difficult to cope with as the treatment itself.  I know there are people out there on ‘watch and wait’ and I don’t know how they deal with the endless uncertainty.  I take my hat off to them.

So, with a bit of luck and an improved chimerism score I can finally start thinking about a future.  I spent Monday afternoon with an occupational health practitioner to start discussions about a return to work plan and of course I have the FA Cup Final to look forward to at the weekend.  It says a lot about cancer and the twilight world you live in during recovery that the first day back at my desk as an accountant seems almost as exciting and tantalising a prospect as Palace playing at Wembley on Saturday.

As a quick postscript I’ve just taken a call from a consultant at the Churchill to say that the chimerism score is still only 35%, so next week we’ll be discussing a top-up from my sister.  I will still forge ahead with a back to work schedule and see how it goes….the plan is to give me a dose from sis and then, to quote the consultant directly, to ‘watch and wait’ before giving me some more!

 

Me, my allograft and Steve McQueen

I don’t have much in common with the late, great Steve McQueen.  I’m hoping that my skirmish with cancer will have a more positive result, but then I have the advantage of another 30 years or so of research and some pretty clever treatments.  However, I was reminded this week of Virgil Hilts’ swift recapture in the Great Escape.  I was discharged from hospital on Monday afternoon after a month of incarceration only to be recaptured and imprisoned again less than 24 hours later.  Ok, I didn’t jump the perimeter fence of the hospital on a motorcycle, but you get the picture.  I’d spiked a temperature of 38 degrees, which is a bit of an occupational hazard when you’ve got a weak immune system, but it was frustrating none the less.  At 37.5 you’re told to call the triage team or the ward and a temperature of 38 generally means readmission and heavy duty antibiotics.

So, it was a case of same shit, different ward as they couldn’t fit me in on the permanently popular haematology ward.  So, I was an ‘outlier’ on the Blenheim head and neck ward for a few days.  I like the idea of being an ‘outlier’ it has a ring of cool about it which is totally at odds with the reality of doing word searches all day long, stressing about temperature spikes and watching old episodes of QI on Netflix.  Still, when the film of my life comes out I think I’m going to call it ‘The Outlier’.

The allograft (a stem cell transplant with a donor’s cells) itself was something of a curate’s egg.  Physically the experience couldn’t have been much better.  I was lucky.  I didn’t pick up any major infections along the way, I managed to maintain a reasonable appetite and didn’t suffer any of the more problematic issues I had with the autograft (a stem cell transplant with my cells) back in 2010.  My sister, who is my donor, produced more than enough stem cells to give us a really good shot at a successful engraftment and about 14 or 15 days after the transplant all was looking good.

And then the blood counts (White Cells and Neutrophils) which indicate how well the new immune system is being engrafted started to fall away.  One thing that you never want to hear your consultant say is, ‘I’m concerned’.  The doctors were flummoxed, the neutrophils dropped to zero and the white cells collapsed too.  The team were pretty honest in their appraisal that they were looking at something unusual and, at one point, there was a real possibility that the graft had failed and that we’d have to start from scratch and hope for the best.

At that point it felt just like the roof fell in.  All the things that I’d put to the bottom of my mind since being re-diagnosed bubbled, unwelcome, to the surface.  The shock of the relapse, the consequences, the emotional scars left by the autograft and the possibility I’d have to climb the allograft mountain again.  I won’t bore you with the details dear reader, but let’s say I ended up having a very useful session with a psychologist which ended with him saying, in a lilting Irish accent, “well, the good news is you’re not mad”.  That was comforting at least.  I wasn’t losing it, I was just subject to the kind of stresses I’d never had to encounter before, was getting cabin fever after 3 weeks in my cell, and obviously wasn’t feeling great after a load of chemo and a new immune system desperately trying to bed in.

And then the counts came back.  They gave me some hormone injections to boost the scores as well, but once the white cells, neutrophils and platelet numbers got some momentum they really started to move.  “That’s your sister”, my mum said, “she can sometimes be a bit slow to get going, but she gets there in the end”.

So, the net result is I’m sitting here now with a bit of acne – the immune system’s coming on so quickly I’m starting to get mild graft versus host disease, more of which anon.  That’s a good thing as it shows engraftment is taking place – you just don’t want too much of it, because it can be fatal.  With a bit of luck I’ll be home for a bit and my hospital visits will be restricted to the weekly appointments I’ll have in Oxford for the next few months.

It would be unfair of me to sign off without a word for some of the people who’ve helped me through the last few weeks.  The team in Oxford, as ever, was exceptional, not only in terms of medical efficiency, but also in terms of their compassion.  I can’t recommend them highly enough.  Then of course there are my parents and my wife (my rock, as usual) who slogged up and down to Oxford to see me when I wasn’t always in the jolliest of moods.  To my sister who didn’t bat an eyelid when I phoned to say that I might need a few more cells after having already gone over and above the call of duty – I’ll never be able to thank her enough.  To my in-laws and friends who’ve been there for me along the way – thank you it does make a difference.  Finally to former Crystal Palace legend Geoff Thomas, not just for his words of encouragement along the way, but for blazing a trail.  During the really dark times I thought of Geoff, his battle with leukaemia and everything he’s managed to achieve since.  For a fellow sufferer of blood cancer, the inspiration and hope that gives the rest of us is priceless.

And, ok, maybe I’ll never jump that fence on a motorcycle, but I have to say that walk to the car after being discharged on Friday evening was exhilarating enough and another step in the journey.  There is still a long way to go, but with the support I have around me, I know I’ll get there.

 

 

 

 

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…