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A final goodbye and some thoughts on World Cancer Day

The last two days were the kick up the proverbial backside that I needed to finally write and post an update or two here.  But this first post isn’t (much) about me.

Yesterday I paid my last respects to a man who was a great influence on me.  Michael Scoular was my tutor (a kind of formal mentor) at school, who oversaw all aspects of my development from the ages of 13 to 18.  He was also the Head of Modern Languages and taught me German, which went on to be my foreign language of choice, and nowadays is the first language spoken in my home.  Ja, echt.  And he wasn’t a scientist, but it was his careful guidance which skilfully opened an educational path to me which was at its core scientific, but never let go of language.  And as the eloquent tributes at his funeral yesterday expressed, Michael also struck also consummate balance when steering the line between tough old-school authority and kindly, fatherly support and observation.  He was just what I needed.  Danke, Michael. Rest in peace.

Michael died on 11 January 2017 of cancer.  I’ve not yet been told what type, but it was only diagnosed in November, and he was admitted to hospital on Christmas Eve.  It was clear from the outset that it was terminal.  And he was cremated yesterday, the day before World Cancer Day.  There are lots of ways you can get involved in this if you want to, like this, or this and so on, but here are some of my own thoughts, followed by my top(*) 5 goals for us all on the topic today:

  • There are LOTS of very different types of cancer and often media reports, news of friends or family (such as in Michael’s case above for me), or even more specific discussions, go no further than “has got cancer” or “sadly died of cancer”. It makes all the difference in the world what type of cancer someone is diagnosed with.
  • I know it’s more complicated than that, and quite often social or personal constraints perhaps quite rightly hold us back from prying too deeply, but it is important and makes a difference to how we all move forward in our collective battle against this collection of conditions.
  • If someone rang in sick at work and said “Sorry, I can’t come in, I’m infected” perhaps they’re just being black humoured, have got a cold, and you can expect them back in a few days.  On the other hand, if they’ve just flown back from West Africa and have got Ebola, you may be looking for a new financial administrator before long.  OK, so now I’m being black humoured, but you get my point.
  • The same goes for cancer.  Lifted directly from here:  “More than 7 out of 10 children are cured of cancer. Testicular cancer, Hodgkin’s lymphoma, and many cases of leukaemia can all be cured in adults with current treatments. Most skin cancers are cured with surgery. And many cases of thyroid cancer and cancer of the larynx (voice box) are cured with radiotherapy.” On the other hand, there are as we all unfortunately know some types of cancer which, especially if only diagnosed at an advanced stage, frankly are a fairly prompt death sentence.
  • Sure, so I’m probably preaching to the converted here by spelling out the above, but maybe not exclusively.  So my list of goals on World Cancer Day, is this:
  • Let’s talk about cancer more. And not in a shrugging, tutting, “oooh, innit terrible” way.  I mean let’s all find out more about cancer, shine a light on it, understand it, and study it.
  • Don’t be afraid of the topic.  No, that’s not my place to dictate.  What I mean is, it’s fine to be afraid of the topic, but don’t let that hold you back from finding out more about it.  Engage with it.  Knowledge is power.  Don’t shy away from the science.  If you’re not a scientist, that’s fine, but just keep asking “So what does that mean in layman’s terms?” if it’s sounding complicated.
  • Differentiate between the many different types of cancer.  If someone who should know better just says to you “It’s cancer”, and of course if the moment is right, pull the face and ask “But what type?”.  If I told you my friend had broken a bone in his body, he could certainly expect differing levels of sympathy from us depending on whether it was his neck that he’d broken or his little toe.
  • Support the many different types of research into and work in cancer research and cancer therapy.  And I don’t just mean dropping some loose change into a collection box, making a generous bespoke donation, or even doing your own fund-raising (by being brave, silly, athletic, stubborn, or preferably all four simultaneously).  But I do mean those as well.  Yet one of the most effective ways of supporting is by advocating the international free movement of the researchers and clinicians that do the work.  And this ban may only be temporary, but it’s hard to be optimistic that there won’t be more similarly myopic measures.  We are stronger together.  Guess which way I voted in the UK referendum on 23 June 2016.  I’m not remoaning though.  It’s vital, in the specific context of the topic of tacking cancer and solely looking forward, that all that it possible is now done to allow foreign nationals to have the freedom to come to the UK to train and work in cancer research and treatment, and to ensure that UK individuals have the same freedom to go abroad to do the same.  Push it up your list of priorities.

 (* “top” in the sense of “I’ve just thought these up off the top of my head; they are in no particular order.)

Have a good weekend all.  Spare a moment’s thought for World Cancer Day today, and the next time the topic comes up, just prod it a little further when the moment is right, even if science isn’t your thing.  Educate yourself, and guide others towards the light.  It’s what Michael would have done.

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Lessons learnt about infection in the cold, dark, winter days of January

I got hit by a dose of reality in January.  Well, hang on, I’m getting a little ahead of myself there.  First I got hit by a dose of a winter flu virus.

I woke up on a Saturday morning (it’s always the weekend that I get ill, and normally I’m “nicely” recovered by late Sunday evening, in order to go to work on Monday morning…) and, well, barely woke up.  Bed was where I stayed for almost all of the weekend, with my greatest achievement being a heroic transfer to the sofa in the sitting room at some point on Sunday.  And there I stayed.  Not just for Sunday as it turned out, but for several more days.  One reason for this is that whilst the rest of the house is subject to the temperature defined by the central heating, an individual gas fire in the sitting room allowed me to keep that room nice and snug, even at 3am, without warming up the rest of the house.

Lesson #1:  If, at least in my condition, you find yourself rather temperature-sensitive, it might be a good idea to take your own bodily temperature. With hindsight, not taking my temperature seems idiotic, but I wasn’t quite thinking straight at the time…

So I drifted on to mid-week, not really getting off the sofa much, but somehow thinking “ah, but tomorrow I’ll surely feel better”.  In fairness to me, there was a hint of logic to this thought, in that in mid-December I’d had a minor bout of some kind of winter virus, which I’d shaken off in just a couple of days.

And then come Wednesday that week, my steroid day, I popped the dexamethasone and, lo and behold, started to feel much better late morning and by the afternoon, was positively bouncing along.  Again, with a clear head, it seems crazy that I didn’t really register the fact that it’s like that EVERY WEEK with the dexamethasone…

Lesson #2:  Be aware of the very artificial – and always temporary – boost that the dexamethasone gives you.

And it is temporary, because by Thursday afternoon I started to realise that I was crashing back down rather fast, and on Friday morning, finally taking my temperature just to put a numerical value on it, it was staring me rather bleakly in the face – I was really quite unwell and needed some professional medical intervention.  So, after a call to the acute oncology ward at the hospital, I packed a bag with a few items of nonsensical stuff and then slumped back down on the sofa and got my lovely wife to pack some more sensible items, and then was dropped off at the hospital.

A quick blood test later and the reality was unavoidable – yes, I knew I wasn’t very well, as I felt rubbish, but the blood values spelled it out to me – I was quite significantly neutropenic (i.e. with a low neutrophil count – neutrophils being (normally) the most common type of white blood cell and an essential part of the immune system).  The medics who talked to me had then sense to tell me off for not coming in sooner and in particular for being so slow to take my temperature.  And I was admitted to the hospital and immediately started on a powerful IV antibiotic.

Lesson #3:  Don’t forget that the chemotherapy, as well as attacking the myeloma cells, also suppresses the immune system, and of course as well as the dexamethasone mid-week I’d also kept merrily taking the lenalidomide all week.  Suffice to say that as soon as I was admitted (and thus no longer in charge of my drug regime) I wasn’t taking the lenalidomide for a few days…

I rapidly felt much better after a day or so on the IV antibiotic, and, having been admitted on a Friday, by Sunday afternoon was feeling much more normal, quite bored, and hoping that on Monday I might be discharged.  Until on Monday morning the really very experienced “junior” doctor who did the ward round told me that the chest x-ray I’d had, the sputum tests I’d done, further blood tests, and the sound of my chest, told them that I’d got pneumonia

I really didn’t see that coming.  Yes I suppose I’d noticed that my breathing was a bit flatter than usual, but I’d not thought much of it.  I wasn’t coughing much.  But that kept me in for another couple of days, though the IV antibiotic had really done its stuff, and around then I was in fact switched from the IV to an oral antibiotic.  But a couple more days stuck in the hospital were unavoidable, until on the Wednesday I was discharged. A slow couple of days at home – back to the sofa! – but feeling entirely different and by the weekend I was recovered, but just slow to move around.  I went back to work the following Monday.

So all in all various lessons learned.  On the one hand, as this whole blog shows and as I emphasised in my last post, I’m lucky that generally, despite the fact that I’ve been diagnosed with two conditions that even individually are serious, and often have a rapid negative effect on those who are diagnosed with even one of them, much of life has continued fairly normally for me in the nearly 4 years since my diagnosis.  But on the other hand there are limits, as this recent episode of viral (and bacterial) infection showed me, and I can’t just pretend that I’m physiologically normal.  Most of all need to watch out for infections when they turn significant, and get help promptly when they do…

 

More on haemoglobin and running…

Dose of reality:  I think it’s not just the haemoglobin.  It was great to hit some kind of magic sweet spot last summer, revived by a two week family holiday in SW France, camping under the pine trees, jogging late in the day to avoid the heat, and reinvigorated by a diet of of vin, fromage, saucisse, and what the the French colloquially call “le dexamethasone”.  Ah steroids, such a beautiful universal language.  But the following months of 2015 also demonstrated to me that even trying to align my running efforts with the weekly boost of steroid wasn’t really resulting in much improvement in the running experience, and in fact to be honest there’s was even more of a slow-down.  Not long after that holiday one of the excellent haematologists I see concluded that my haemoglobin level was back up to as good as it was going to get, and I stopped taking the iron pills, so my irrational hopes of keeping taking them and ending up with super-human haemoglobin levels never quite panned out.

Despite that I’m going to immediately cash in my busy dad / worker card here anyway, and it’s fair to say that the latter part of 2015 was bloody hard work.  Yet a large part of that was due to the travel that I did.  Of course, by the same token, I’m very aware that I’m lucky to be able to travel like I sometimes do for work – both in comparison to others and more significantly, here, despite my pesky “conditions”.  Between the end of September and mid-November 2015 I was in Cambridge, Chicago (one US trip), Minneapolis, Seattle and San Jose (second US trip), Taipei (Taiwan), and Okinawa (Japan).  If you’ve travelled like that for work, you’ll know what a drag such regular long distance travel is.  If you haven’t, yes it used to be cool jetting round the world, but now – the right side of 40 and with a family – it’s 80% a pain in the butt / 20% fun.  I really feel the need to reiterate that my point in spelling out all that travel is not to brag about the air miles I’ve clocked up (or perhaps to publicly atone for my environmental sins…), but to acknowledge that I’m lucky, mainly medically lucky, to still be able to travel so much.

But that didn’t leave a lot of time for exercise, and my fitness reached something of a low ebb by December 2015.  And then throw into the mix a minor hernia repair (hey! don’t look at me like that – I did say I’m the right side of 40 now, right?) in early December, and I, almost literally, just crawled my way into 2016. And then January 2016 brought its own set backs, but read the next post for more on that…

So, running isn’t really happening for me at the moment, but I’ve been pretty good at getting down to the gym recently (twice starting at about 6.30am this week!), so we’ll see what modicum of fitness I can recover…

So apparently this haemoglobin stuff is quite useful…

I’ve been trying to keep fit and not managing very well.  It’s a time thing.  You know how it is, you sign up for a gym, you do the math(s) of how often you think you’ll go, how much the subscription is and so on, and then reality kicks in, work and family do their thing, and the gym owner ends up doing a lot better out of the deal than you thought.

I also used to run quite a lot.  Heck, let me just casually drop in to the conversation (this is quite definitely being my conversation after all) that in my time I’ve run the London and Berlin marathons, and used to do some “mountain marathons“, where you and a similarly masochistic friend navigate for two days across some remote mountain terrain, with everything you need (tiny tent, tiny this, tiny that) to “survive” for the weekend.  It was fun, really!

But the running hasn’t gone so well in the last year-ish.  It seemed to be OK in the first year after my diagnosis in 2012, and I even got back in to it pretty quickly after my high-dose-and-stem-cell-rescue treatment in 2013.  But in about the last year it just hasn’t been as much fun.  The pace I could manage was a lot lower, often to the point that even on a shorter run (e.g. 5K) I needed to stop a few times to recover before continuing.  And bike rides have been harder as well – especially the uphills!  I used to be the polka-dot-man (Tour de France jersey reference) amongst my cycling friends.  Not recently.  Not good.  And in the back of my mind I didn’t really know why.  Was it the effect of the underlying disease on my heart?  Was it just psychological?  Was it a feature of the ongoing treatment in some way?  Perhaps a mix of the three?

However in the last few treatment cycles (months), I’ve been on the same old, same old treatment, but have also had some ferrous sulphate (iron tablets) thrown into the mix.  My iron levels were a bit low it turns out, and as a result (one assumes) my haemoglobin levels were also a bit down.  The normal level for a man is approximately 138 to 180 g/L.  I wasn’t a huge amount below this (I’ve always been over 100 say) but was certainly below the lower bound. So I’ve been taking ferrous sulphate for the last few months, which have now brought the haemoglobin levels nicely up into the acceptable range.

I hadn’t been running for a while, but arrived in SW France a few days ago with the family for our summer holiday and finally had the time to get out and try running again.  Just jogged along the coast and back for 5km, but wonder of wonders,  I could keep jogging the whole way.  Shoddy pace – 5km in about 32 minutes would, I confess, have elicited some poorly disguised derision from me only a few years ago – but it was great to just be able to plod along for the distance without stopping.  Next goal – crack the 30 minute barrier!  Seems this haemoglobin stuff is quite useful… So as I’ve said before, keep taking the (iron) pills…

More than 3000 pills (and 550 injections!) later

It’s been a while since I updated things here…. which is generally a pretty good thing.

Looking back I’ve now been on essentially the same treatment since October 2013, based on lenalidomide (Revlimid).  Browse back a couple of posts to see my comments about this particular choice (not mine) of therapy.  Overall though, it’s been a good ride thus far, in particular that I haven’t really ever noticed any side-effects from taking the lenalidomide, which is great, for example by comparison with two of the previous therapies that I’ve dabbled in, namely thalidomide (which is a reasonably strong sedative) and high dose melphalan (which gets you a banged up (in hospital) for a few weeks and makes your hair fall out).

I guess that more important though is it that the treatment has been having approximately the desired effect of keeping things under a reasonably good level of control.  Put a bit more technically, that’s been monitored in terms of the light chain levels in my blood, which have come down to a level which, at least for me, is fairly low.  More specifically still, where a normal level for the light chains is of the order of tens of mg per litre, I’m now in the region of hundreds of mg per litre.  Not ideal, but a good improvement on the thousands of mg per litre that I’ve been at for much of the time that I’ve been on treatment and a great improvement on the over ten thousand mg per litre that I had at diagnosis…

The particular combination of drugs which I’ve been taken in combination with the lenalidomide has changed a little.  About the first half of the lenalidomide cycles (now into 4-week cycle #20) were a combination of lenalidomide, dexamethasone and cyclophosphamide, whilst the second half have been a combination of lenalidomide, dexamethasone and clarithromycin.  I’ve never noticed any difference between these two regimes in terms of side-effects, but one pleasant change more recently has been a reduction in the dexamethasone (steroid) dosage.  That’s always been the most significant drug in terms of the day-to-day effects of the treatment.  Previously I was taking 20mg of the stuff on Thursdays and Fridays, and ending up fairly seriously wired through Saturday (and only getting a few hours sleep each night) and then crashing down on a Sunday and Monday (with naps needed and a good dose of brain-fug).  A few cycles ago I came down to 10mg on both days, and now I just take 10mg on a Thursday, so only a quarter of the original dose.  This makes a great difference, as the up-then-down is still definitely there, but it’s very manageable and barely affects daily life.

And daily life has been busy.  A full-time job and family life don’t leave a lot of time for much else.  One thing (of many) that I’ve not found as much time as I’d like for has been exercise.  I’m a member of a gym near home, but (like many gym members) I don’t manage to go anything like as often as I should,  In fact there have been times when I’ve managed to go to hotel gyms when travelling for work more often than I’ve made it to my home gym.  Anyway, now that the weather is better I’m managing to get out on my road bike more often.  It’s a bit of an uphill struggle (quite literally) but nice to be out at least.  There are a number of factors which are co-conspiring to make exercise a bit harder these days and it’s not easy (or even possible perhaps) to know which is the most significant:  the underlying disease (most particularly the effect of the amyloid deposits in my heart – clinically measured my heart function is not what it used to be, though it’s still fairly good), general unfitness from not having exercised as much as I used to, or the effect of the ongoing chemotherapy – mild anaemia and some muscle reduction from the steroid – oh yes, imagine my disappointment when I found out that dexamethasone is not an anabolic steroid (in the style of bodybuilders), but a catabolic steroid (which tends to cause muscle reduction – damn).

So there we are – the current status – and as the headline says, since being on the lenalidomide I worked out that I’ve taken about 3200 pills since October 2013 – and self injected with Clexane (the anti-coagulant) about 550 times…  Yes, I now thoroughly rattle and my belly looks like a old pin cushion, but it seems to be working at the moment, so for the time being I’ll just keep popping the pills (and jabbing myself in the belly).  Oh, and I must get to the gym…

Thanks for listening folks.

Excuses, excuses, excuses

Good heavens, I’m posting a blog update again!  Apologies to those who have been looking for an update a little sooner.  There were a few in the pipeline, but [delete as appropriate]:

  • I wrote hundreds of them but just couldn’t for the life of me find the “Post now” button – there it is! How could I have missed it!
  • I wrote them all out on paper first, but spilled beef gravy on every single one and the dog ate them
  • The terms of my court order have prevented me, until now, from publically communicating with groups of more than 6 people
  • I’ve been so very busy with work and family life that writing a short blog update was just out of the question
  • I kind of just forgot about it
  • The treatment has just been ticking along in the background, without too much effect on daily life, and it was nice to just disengage from the whole issue for a while

[You may gather that there is a spread of veracity to that list, tending to start weakly and improve going down the list]

A high-level summary

After my hospital stay last summer for high-dose chemotherapy (melphalan) followed by autologous stem cell rescue (i.e. using my own previously stored stem cells to repopulate my immune system), I started on some “consolidation” oral (pill-popping at home) chemotherapy in late October – to improve on (“deepen”) my response to the melphalan treatment.

This consolidation treatment has been based on lenalidomide (Revlimid), in combination with cyclophosphamide and dexamethasone.  Those familar with this kind of stuff will recognise this as “RCD”.  As I’ve previously commented, being on the lenalidomide has been really good, in that I really don’t notice that I’m taking it and don’t appear to have suffered any side-effects.  Lenalidomide is a derivative / development of thalidomide, which I took previously and although it was really quite effective in terms of treatment, it was quite hard work (thalidomide is quite a strong sedative) and has left me with some numbness in my toes.  The more significant feature of this RCD treatment is the effect of the dexamethasone (a steroid).  I take it on Thursdays and Fridays, and don’t get much sleep the following nights.  Actually this itself isn’t so bad, as I get a lot done on those days – both from just having more hours in the day and from the mood / drive / energy boost the dexamethasone brings.  The downside is the consequent come-down / crash that inevitably follows later in the weekend and tipples over into Monday a bit.  But you can plan for it and it’s workable.  Incidentally, for others taking dexamethasone, I understand that the default prescribed pattern is to take it for four consecutive days, separated by a week off.  Discussions with my consultant revealed that there isn’t much evidence either way for which pattern (2 x 4 consecutive days split by a rest week; or 4 consecutive weeks taking it on 2 days) is more effective.  I gather from others, and can well imagine, that 4 consecutive days of dexamethasone would be really quite hard work and I recommend the other pattern.

And generally the progress of treatment with RCD has been good, with progress (measured by the level of free light chain proteins in my blood) overall being in the right direction (downwards) – with some of the usual fluctuations (for me) on the way.  The values aren’t where they should be, but hopefully the downwards progress with this regime can keep going in that direction for a while yet.

One curious hitch

There was one minor hiccup though.  Just before Christmas one of my liver enzymes (ALT) that is monitored shot up, and it was unclear why.  I came off the treatment for a month or so (essentially skipped a cycle) whilst various further tests were done to try and track it down.  The curiously good news (I think) was that it turned out not be be any kind of reaction to the treatment, but in fact I’d picked up hepatitis E.  OK, so not so good in itself, but good because a) I could resume the same treatment regime; and b) by the time it had been identifed as the cause, I’d already independently seen it off (and had the antibodies to prove it) – thus demonstrating an effective immune system (at least in this regard).  The footnote to this story is that I’m pretty sure what might have given me the hepatitis E (which is well known to be present in quite a lot of uncooked pork).  A week or so before the ALT levels started rising, I’d been in Grenoble, France for a work trip on my own, and one evening ordered a starter, which to be honest I wasn’t entirely sure what it would be.  Turned out to be a kind of sliced pate sausage, which had only been very lightly pan-fried on each side of the slices.  More curious is that I actually took a photo of it at the time.  I’m a bit of a foodie, but don’t often go as far as taking photos of resturant dishes, but I was eating on my own and got a message from my sister asking what I was eating, so I showed her.  And here it is:

Dodgy (but tasty) French pate sausage

 

 

 

 

 

 

So, you have been warned.  Possibly better to establish what you’ll actually be getting when you order – though that does take some of the fun surprise element out of it.  (I mean the fun surprise of trying some new food, not the fun surprise of contracting hepatitis E).

More soon, folks.

No ordinary honeymoon – a gruelling way of fundraising for Myeloma UK

Today and tomorrow two very good friends of mine, James and Helena Smith are taking part in one heck of an adventure race in New Zealand.  This is the Speight’s Coast to Coast multi-sport race.   The Speight’s Coast to Coast traverses the South Island of New Zealand from Kumara Beach on the Tasman Sea to Sumner Beach on the Pacific Ocean.  Between them, as a team of two, they will cycle 140 kms (three stages of 55km, 15 km and 70 km), run 36 km (including a 33 km mountain stage that crosses the Southern Alps) and kayak 67kms of the grade two Waimakariri River through the Grand Canyon of New Zealand, the Waimakariri Gorge.

Speight's Coast to Coast

Other than the obviously gruelling nature of this undertaking, two things stand out for me about James and Helena doing this race.

Firstly, this is (part of) their honeymoon.  Where most people might head for a magical beach on their honeymoon, James and Helena have sort of chosen to do the same, but in their own particular style are doing so by cycling 140km, running across the Southern Alps and kayaking 67km of a pretty serious river.  Perhaps someone could reserve them a place with a pair of towels on the beach when they get there?

The second is that they are using the event to raise funds for Myeloma UK, because, well erm, of me and my diagnosis.  Wow, gosh, thank you so much guys.  There’s a whole bunch of emotions swirling round in my head – I’ve soon learnt that that’s something of a feature of a cancer diagnosis – in response to the news that you’re doing this.  Gratitude, mild embarrassment, love, awkwardness…  News like this is unfamilar territory for me, but it’s great to know that I’ve got such good friends supporting me and willing to go to such lengths to demonstrate it.  Very much looking forward to hearing all about it when you’re back.

JustGiving Home

So, dear readers, if you would like to sponsor James and Helena in support of Myeloma UK, please do so here.  I, and they, would be very grateful.

And if you’d like to follow how they are doing this weekend, I think you can do so here – they are entrants #720.

Pedal, run, paddle!  And then, please, relax a little for the rest of your honeymoon…