Hairy Cell Leukaemia

Today I was diagnosed with a cancer known as “Hairy Cell Leukaemia”  (yes, I would get the one with the amusing name).   After

I bought this to wear for my PET CT – No residual superpowers to report yet

struggling with gaining fitness recently for a couple of 10k runs, and some other physical symptoms and just feeling run down in general I went and had some tests.  Arguably, in the best shape of my life, (despite!) having just turned 45, practising Yoga weekly, participating in local Park Runs, entering several 10k runs each year for the last 4 or 5 years, taking up cycling again a bit more seriously, and probably most importantly, having a (even if I say so myself) a better than average diet (after first reading Tim Ferriss books, and more recently my fellow Waterford man Cian Foley’s Don’t Eat for Winter).  (I’m an enthusiastic foodie and love to cook)  No lifestyle choice I have made has caused this and no lifestyle choice I could have made would have prevented this.. bummer eh?  If I’ve had a total of 20 days off ill during my 23 year career I’d be surprised (turning up with hangovers don’t count… you are there in body…)

How did I miss the symptoms? Well, you just write them off as something else.
  • Tiredness (fatigue) weakness and breathing.  This became most apparent when training and was the main trigger really. But for the first few months (this is a slow burner) went unnoticed…. who works & commutes in London isn’t tired at the end of the day?
  • Bleeding & bruising, didn’t really suffer with this, other than the occasional bloody nose blow.. but again, commuting on the tube, these things happen.
  • Discomfort in upper stomach.  This became more prevalent lately which with the fatigue triggered me to get tests.  I first wrote this off as bloating after eating (slow carb diet has lots of beans & pulses). I also attributed to frothy coffees which I cut down, and yes bizarrely, wearing slim fit shirts (especially on rehearsal nights, where you breath deeply to play trumpet).  Seeing results of my MRI/PET scan and the size of my Spleen I now know the answer.
  • Frequent infections – didn’t really suffer here, but on consultation day, I was running a fever and needed antibiotics and was instructed to take temperature regularly.
  • Low blood counts – well, these did show up dramatically in my results – hence the triggering of next actions by the doctors at Enfield.
With tests of course come results.  After GP visit, blood tests same day, within a week I had referral appointment in Chase Farm Enfield with specialist. There I had physical exam, more bloods and bone marrow samples taken (a rather bizarre experience) and PET/MRI scan booked in for the following week at the Royal Free (where after my scan I saw some of my buddy Matt Phillips paintings which was a pick me up, as intended!!).  I’ve also been (and finished) a course of antibiotics which have done the trick in bringing my temps down (and they have remained in normal range since).  During this time I had 24hr direct line to a specialist  haematology nurse.
For last 2 weeks or so, I’ve been working from home, as immune system low I need to avoid crowds for risk of picking up a bug that might just complicate things.  My new employers MBA The Agency have been fantastic, especially my boss Alex Cowell. I have been given the flexibility to work around appointments and am fully geared up to work from home.
All of these tests, consultations and meds so far have cost me… £7 in parking, and £4.50 for a thermometer… #saveourNHS before despicable Mayham and her cronies sells it off to trumptynumpty and his cronies…
Now, that was the diagnosis, what is the treatment?  Well, initial treatment will start next Monday 24th.  5 days of chemo – one injection a day (about 1hr a day at hospital).  I will have weekly bloods done, plus 4 weekly checkups.  I will be on other meds for 6 months or so to build up my immune system.  This is usually sufficient for this condition.  To use the doctors own words, of all the nasties you could pick up, this is the least worse scenario.
I don’t know what of the many documented side effects the medication will have. Either way, destination is full recovery, the journey there may be a bit bumpy.
I will have to continue to avoid crowds (my fans are gutted…) for foreseeable future (mainly rush hour commuting and the like).  Not sure as yet how this will affect any participation in bands / rehearsals etc as will really only know how I am after treatment.  I’ll obviously be following doctors orders on these matters.
This has obviously been a bit of a shock but Mrs Q and I are doing good! Positive vibes and after today’s diagnosis even more positive.  Sunday morning’s phone calls to inform the family were traumatic to say the least, but at least after today’s diagnosis, there is much more positive news.  To my extended family and friends, sorry you had to find out this way, but feel free to share, it’s about creating awareness.  I’m doing well and looking forward to getting stuck in to treatment and on the road to full recovery.
Why am I sharing this? Well, I’m not after pity or sympathy, just awareness.  This crept up on me (ok, hindsight is a wonderful thing) and I would like to repeat, create awareness so others who may be putting off or ignoring something might be triggered into action based on what they read here.
I will be following of course my treatment program as set out by the doctors but am also interested in how this can be complimented with diet and exercise.  I have lost weight and have been told to keep weight up.  I am grateful to a few friends out there already who have sent over diet related information that I will be digesting (not in that way) soon.
Take care all, look out for one another, play nice… If you have any doubts about lumps bumps, tiredness, paleness, weight loss …. get checked out…. use the NHS walk in centres if you don’t want to use up your GP’s time (get a ticket, get in line, read a book..)
If there is something you WILL be referred.
Lots of Love folks! God Bless… Peace & Love .. Namaste!
Remember, everyone you meet is fighting a battle you know nothing about. Be kind, always…
Robin Williams

Also published on Medium.