Thought I’d start publishing parts of my fledgling book – originally I was going to write an account of our time at sea and that moved onto including how the ocean trip related so much to handling my challenge with illness. That version turned into a 200,000 word tome and I have decided to come back to referencing the illness side whilst focusing on our time at sea.
This is the draft intro – all thoughts and insights welcome be they in the ‘Comments’ or via a private message or email.
I’m only publishing this on the blog, and won’t publish the link on FB or Twitter.
‘When I was on the Atlantic….’
I thought that attempting to row the Atlantic and be the first boat in history to break the 30 day crossing and setting a new world record in the process would be the biggest challenge of my life.
The original idea was to simply row across the ocean but as time went by, different guys came and went on the sea trials and the focus became more and more about rowing across the 3,000 miles of Atlantic Ocean faster than anyone had ever done it before. It was going to be a race against time, putting everything we had on the line, our physical fitness and mental resilience, to race a rowing boat across the ocean.
The ocean is story is about taking on a big challenge, breaking it down into ‘digestible’ chunks that we can handle according to how we feel there and then. It is about team work and team breakdowns, individual heroism, courage, determination and fear.
It is about facing what life throws at us and being able to find a way to handle that and look ourselves in the mirror and be happy with who is looking back at us. It is also a book about the challenges we face in every day life and how we choose to handle them that makes the difference, through the good times and the rough times.
My work as a professional speaker for international and domestic corporate events and in education was built on our ocean trip and how it relates to ‘real life’. Everything we experienced at sea, the highs and lows, the setbacks and wins, we all experience the same things in normal life but under less extreme circumstances and it is those same things that make the story relevant to any audience member as they can relate it to normal life.
I never dreamed I would face a bigger challenge and yet on the 18th April 2017 I was diagnosed with Acute Myeloid Leukaemia. It had been a long time coming as I had been diagnosed with a condition two years previously that could migrate into Myeloid Fibrosis and then onto AML – with a few ‘extras’ of chromosome damage that made it even harder to treat.
There had been a build up of a few months that I was aware things were not going as they might be; my running partner started handing my arse to me on a plate and we were suddenly running each mile something like 2 minutes slower and I even had to stop with back pains. Stopping is not my style. That was January/February time; in March things went downhill much more quickly.
Severe back, hip and thigh bone pain started coming on; an osteopath diagnosed a slightly twisted hip, my normal physio had bigger worries as he felt everything was pretty much normal and the level and frequency of the pain was an altogether different animal. It got to the point that I would be in agony on my bed, struggling to draw breath and with ice packs on my back to try and draw the pain away. Chest pains developed too – across my sternum which were really acute and left me breathless – even just walking became an issue as I could not find the breath to make a few hundred yards without stopping with a pounding heart and acute pain.
So came the 18th of April; Lisa my wife and I were staying in a hotel in London the night before my appointment – just ten minutes walk from Guy’s Hospital, a walk that in the end took over 20 minutes of struggle to get there with the severe chest and hip pains back, shortness of breath, pale with blue lips – even I had to accept that things were seriously wrong.
The consultant took one look at me, got out the usual greetings of ‘Hello Mr Rowe, hello Mrs Rowe.’ and then went straight into, ‘I’m afraid that looking at your previous test results and how you look right now, that you have developed leukaemia.’
The world stops really. Where do you go with that?
The morning after our appointment at Guy’s in London we were at Addenbrookes Hospital in Cambridge, 40 miles from home, but the closest hospital that could deliver the treatment I would need. It was all very scary; I was feeling terrible and the oppressive fear of walking into the hospital, asking for the Oncology Department to have blood tests done and meet the Consultant, Anna, who was going to lead my treatment.
The other joy was being told I would have to have a bone marrow biopsy which is a very unpleasant experience as they draw off fluid and actual bone marrow from the top of the back of your hip. Local anaesthetic deals with any pain in the flesh, but it doesn’t really do the job with the bone and you can feel the needle penetrating the bone for the fluid draw and even feel a weird drawing off sensation that goes down your leg. The step up from that is the bone marrow itself, the requires a sample that I reckon is about 4mm across – and if it is 4mm across then that is how big the needle is that they have to use a lot of pressure to get through the bone into the marrow.
On top of whirling emotions, still trying to take on board what you’ve been diagnosed with then this is all an emotional roller coaster of tears, anger, fear and horror.
Blood tests showed my haemaglobin, responsible for carrying oxygen round the body was at a level of 71 – normal is 150 so I texted my running mate to tell him that the only reason he had beaten me was I had no oxygen getting round my system. His response was perfect, ‘Doesn’t matter, I still beat you.’ Perfect, that sort of response from my mates was exactly the sort of thing I’d need to help keep things in perspective and for me to keep my sanity.
There followed trips back and forth to Addenbrookes for blood tests to check on my haemoglobin and platelet levels and any required blood and platelet transfusions; the working parameters seemed to be that if blood dropped to 75 I got a top up and platelets if they dropped to 10 and they dropped quite fast even after two units of blood. It was a series then of trips back and forth to Addenbrookes on what felt like every other day for tests or transfusions.
I generally found that after a blood transfusion I felt immediately better but within a few hours I would start getting pain coming on in my legs and hips; by the following morning I was really struggling again as my legs felt they hardly worked and it was a massive struggle to lift them out of bed. Getting to the loo was a struggle and I’d be reduced to shuffling across the floor like an old man, doing my business and shuffling back. During this whole time I was still occasionally getting the horror pains in my hips, back and legs and on top of that the nastiest blood clots of blood coming out of my nose – something a long and as wide as your little finger with the consistency of jelly, all dark claret. Nice.
These were really scary as we’d been told in no uncertain terms that if I had any uncontrolled bleeding we were to get back to Addenbrookes immediately or if we felt we could not do that in an hour to go straight to Bedford Hospital Accident & Emergency. That was something I really did not want to have to be doing and yet a couple of nights I was lying in bed having blown my nose onto a handful of tissues and would lie awake feeling blood gently trickle down the back of my throat – it can’t have been that bad, but still scary worrisome.
As for Lisa I don’t know how she coped; I was in the moment of dealing with whatever latest thing was going on for me, shuffling to the loo, lying in bed with exhaustion and/or pain, blowing out giant blood clots or whatever. For her she was terrified that I was dying in front of her and to an extent I guess that is exactly what was happening; the disease is fatal and as I was not under treatment I was having stuff done to keep my alive and it was never going to offer a cure. Most nights poor Lisa spent hours watching over me, unknown to me, as she thought she would wake up with a body in the morning. Imagine what that must do to your own wellbeing. Just horrible for her.
Twenty two days of this and my diagnosis had been narrowed down and I had also changed consultants to a chap called Charles and as a family we had decided to go the private route for the first two rounds of chemo therapy.
I had an aversion to talking about blood cancer, leukaemia and chemotherapy as there are a lot of negative connotations that go with those words so I quickly started referring to it as Drain Cleaner fluid to sort out the crap in my pipes – a more comfortable analogy for me and in lots of ways pretty much accurate too.
I thought drain cleaner was enough to portray the brutal nature of the upcoming treatment tempered by the Consultant looking at me after I’d first referred to it as drain cleaner and saying, ‘Ian, this is industrial drain cleaner you are getting.’ Signing a consent form that acknowledges that the treatment can be fatal is also very sobering.
He went onto explain that the treatment I was lined up to get would not be delivered to older patients, I get the feeling people over 65 would not be given it for the simple reason that it would kill them.
On Thursday 11 May I was to attend Nuffield hospital in Cambridge for a pre-treatment injection which was unpleasant for me being pretty needle phobic despite being administered by an absolutely lovely nurse by the name of Kate who was so good to Lisa and I. In the coming weeks we’d get to know Kate and the nursing team really well, you couldn’t help that as you saw them 24/7 with multiple contact points for medications, observations, transfusions, consultant visits etc.
The following morning we had to be at the hospital for 8am which meant leaving home at around 5.45am because the rush hour traffic was so bad. As it was we got to the hospital not too long after 7am and found a seat, me, Lisa and my rather sad looking little suitcase and both of us full of apprehension and fear but leaning on each other and our love to get us through today and whatever lay ahead.
We talked about that a little but most of the time spent it in what I’d call contemplative silence before we headed up to the oncology day ward to make a start on the first day of drain cleaner fluid and the beginning of my recovery from what the Consultant had called ‘A very dangerous disease’.
This was a leaving the harbour moment just with the choice taken away as the brutal truth is that it was die or go through the coming process and crack on, so crack on it was, not just for me but for Lisa as well – we were both in this together, much like the ocean trip, but I think it’s fair to say that Lisa was fully on board with this trip whereas she was none too keen on me going to sea, who’d have thought!
However, the theory was the same, the ocean was a big challenge with your life on the line and it was going to require an ability to just keep going whatever came up – bad weather, physical and mental fatigue, new relationships growing, people letting the team down, pain, suffering, excitement, fear – simply a kaleidoscope of all that regular life could throw at you compressed into a 30 foot rowing boat, six men, and hopefully just 30 days at sea.
As I tell that story in the corporate world, relating it to normal life at home and work, I have often had a little voice of doubt about whether the lessons learned there would really apply in a life threatening situation of a serious disease. Well I was going to find out now as that disease had come to visit me. So this is the story of our ocean trip where I learned such a lot about handling a brutal challenge and also about myself and which would turn out to be a life saver for me in the hospital under treatment.
Chapter One to follow at some point – all comments and thoughts welcome.