Today is one year to the day since I had my first preparatory treatment at Nuffield Hospital with a painful injection, paperwork and briefing of what was ahead. A year ago tomorrow Lisa and I were in the waiting area at Nuffield before having the first intro into my chemotherapy, it was very, very frightening.
As I was in Addenbrookes today for a hearing test, seeing my consultant and then having lung treatment I decided to call in at Nuffield afterwards to see the nurse there that first saw us and looked after us. It was very emotional, not least that I’m actually here 12 months later and still rowing the boat. I saw Kate, the nurse, and we both just had a hug then a bloody good cry; Kate said she so clearly remembered Lisa and I coming in, how beautiful Lisa is and how so very poorly I was, I’d gone all but white/transparent and could only just shuffle along.
I’d forgotten just how close to the edge I had got as I was in it – and I know that Lisa still has the horror within her of thinking at the time that every night we went to bed and I’d be getting up all the time, nose streaming blood and clots, coughing blood out of the back of my throat and she thought I’d never make it through to the morning. Kate thinks Lisa is just great and having recalled all that we had another bloody good cry before I set off home.
I only got about 4 miles up the road before I burst into tears again and had to pull over and just sat there and cried for a few minutes before phoning my dad to say it was the anniversary and say thank you for helping with the treatment at Nuffield. I started to cry again and it sounded like a little sob escaped him as he said it was not to worry, that was what families are for. How true, families and friends to be there to support each other.
Anyway, as for the earlier Addenbrookes visit I was there for a hearing test to get a baseline before I start iron overload treatment – people who’ve seen me say I’m a much better colour now but unfortunately that is from too much iron from all the transfusions and it has to be removed as the consequences aren’t good. My hearing was rated as very good (for age!) and so I have no excuse for selective hearing at home now!
I was also in for regular, ‘prophylactic’, lung treatment which I think stops any fungal, bacterial and viral lung infections and is another horrible thing to go through but is part of the price to be readily paid for the end result. You sit in isolation breathing the pentamadine drug in through a mouthpiece and it tastes of burning rubber and after a while I start coughing and gagging – a right laugh. Can’t wait for four weeks to roll by and have the same again – having said that the nurses and receptionist are great and help make these things more bearable. Real heroes.
The third thing for the day was the most significant – seeing ‘The Big Dog’ as I call him, my Consultant for just over the last 12 months and he is a bloody legend not least as he has survived a year’s worth of ‘Ian-isms’ and at one point he did comment that he would have to revise his terms of English – result!!
The Doc explained that things were all looking positive as my bloods were good; liver function was continuing to improve, I needed to make sure I was still drinking enough water to protect my kidney function and we would look to start the iron overload treatment as soon as possible. Can’t wait for that but it has to be done.
Significantly from today I am coming off my ‘prophylactic’ broadband antibiotic and we will see how that progresses with close monitoring on any possible flare ups. A step up from that is the Doc made a schedule to try and get me off the full dose anti rejection drugs I am still on – reducing the dose incrementally 2 weeks at a time and again having close monitoring for any signs of ‘Graft Host Disease’ flaring up again. This is where the transplant starts to reject you and I’ve had a light dose of it soon after transplant and then a nasty go at it just before Christmas which took me to my lowest ebb. Unfortunately that was on my birthday and I had genuinely given up; the Doc was as he put it ‘seriously worried’ about my mental state and Lisa found me that evening playing songs that I thought I’d like played at my funeral which didn’t feel like it would be too far off. It is times like that that the little voice at the back of my head tells me to take just one more rowing stroke, doesn’t matter how bad it is, how little work I put in or what my tekkers are like – just take another stroke.
Anyway, hopefully we’ll have none of that nonsense this time and things will progress as positively – I have little doubt that there will be some downs to go with the ups but the most important thing is it is forward movement.
The cliff edge is still right there next to me and a stumble can mean disaster, but it is perhaps a little less crumbly along the edge but we have years to go yet, keeping on keeping on!
On 24th April I published a blog titled ‘Fear, anxiety and guilt’ (click here to go to it) and described my visit to see the Bladder Doctor and the Haematology Day Unit – I had one more visit that day which was to go back to the Nuffield Hospital where I had my first two rounds of chemo and see the Counsellor there.
I’d seen her a lot when I was first admitted and so she knows me and also she knows Lisa and even Lily plus she had heard plenty of stories on the other kids Sophie, Tom and George and had also met Sophie and Tom on one of their visits. I was comfortable seeing Sue as the ‘palliative care’ counsellor I saw once in hospital reminded me of an undertaker and I swear was eyeing me up for what box size I’d need – I’m sure that is hugely unfair but I never saw her again. The other lady from the hospital felt to me like she was set on getting me Sectioned and I never saw her again either.
It is also always good to see all the team at Nuffield too as they looked after me during the first two rounds of chemo and I was a very frightened little rabbit and it was an overwhelming and scary experience for both Lisa and I.
So why after all this time have I chosen to see Sue again. There are various reasons which have been building up over the last few weeks. One was following a visit at home from an old school and rowing mate and we talked various stuff including how PTSD, despite my thoughts on it, was not the sole preserve of armed forces personnel. Enough said on that as I still suspect that if my old mate let something slip that he shouldn’t then he’d have to kill me to protect the realm – you know who you are…..!! Another reason is the constant contrasts between good and less good – how we are emotionally as the pictures in this blog show, how we feel, getting some good news, often accompanied by less good news – it is so wearing on all of us.
For me at the moment I am struggling to come to terms with a more ‘normal’ life with far less frequent visits to the hospital and more of a waiting game to see how things keep going. The more I move away from trying to stay absolutely focussed in the here and now, just getting through the day, or hour, or minute right in front of me and the more I find thoughts of ‘It’ll be great to do such and such next month.’ I’m noticing that I am becoming more and more aware of just how horrific the last 12 months have been with at times considerable pain, a background permanent fear, at times an immediate sense of terror and few and far between moments of levity and relaxation. I can sit on the sofa and literally cry out with pain at what has gone on and we are still miles and miles from the finish line. It is a proper head fuck and that’s not just me, the same applies to Lisa and the kids and mum and dad who are all ever present in their way.
I also had various conversations with my Consultant over the chances of me getting out of this alive and the best I recall are that the initial odds from the first two rounds of chemotherapy were a 70% chance of surviving the treatment and a 30% chance of it killing me. My Consultant and I had a discussion on that once I had finished the second round successfully – as we put it, if 100 people had started the same day as me there would now be 70 of us in the room, 30 people would be in the ground.
We had a subsequent conversation about what my chances were of being here in a year’s time enjoying a drink in the new patio Lisa was getting built as she was so absolutely certain that I’d get out of here alive. The chances of lasting a year slimmed down some more to 60:40 and I’m not certain if that meant of the 70 people who got through Rounds 1 & 2 and if it was I think that would mean 42 of us having a drink on the patio (it’s not big enough for that but you get the point!) and now 28 more would be in the ground.
I’m not great on stats and maths but by my reckoning for 42 of us to make it to one year, then 58 of us would have to be in a box. All I ever thought about was to make absolutely damned certain I was in that surviving percentage but now I start to wonder about those that did not make it.
One chap I shared a room with died the day I was moved out of it; another chap I was in with along with one other I don’t think made it. The other chap in the room seemed to be properly on the mend and yet two weeks later I saw him in the Day Unit all but unconscious and they were moving his bed up to the main hospital haematology ward. That was before Christmas and I’ve never seen him since. An older lady who I used to chat with and her husband seemed to be wasting away to nothing, I’ve not seen her for months. You see new people coming in full of hope and a bit of bravado, it is not long before that changes and they wither before you and you realise you are looking in the mirror. It’s not pleasant and yet you are here still carrying on, knowing a percentage have not made it this far.
The chances of making it to 5 years with this version of the ‘main event’ that I have are apparently 25%. I am absolutely determined to do all I can to be in that 25% but that means that 75% of people will be in a box. How many started the ‘journey’ when I did, was it 10? 50? 100? 1000? It is a horrifying thought for me and I know of plenty of people who have fought and lost their battles and a lot less who have fought and won. It’s horrible and it pops into my head regularly, especially at night, when I get up 20 or so times to go for a pee. Sleep is hard to come by, guilt is an emotion I’m struggling to come to terms with as so far I have dodged the bullet and so many others have not – without doubt seeing Sue today helped. Approximately 10,000 people are diagnosed with the ‘main event’ each year – all types, but that is still a lot of boxes if I am to survive and this is only one form of the Big C.
Many of you will have heard my opinion, and it is only my opinion, of one or two other people on our ocean boat who simply did not pull their weight and from my perspective it was because one of them was clearly unfit physically and the other just never seemed to be able to get stuck in. People have asked me what the scariest moment on the boat was for me and in many ways it was a point in the early hours of the morning when I was in the cabin with one of the two lads and was looking at him thinking ‘It’s time to put you over the side.’ It was not based on anger or hatred at all, I was beyond that as the situation was simply what it was – he was not effective so we needed to ditch him and all his kit to try and keep the boat speed up and minimise the wear and tear on ourselves. How callous that was but I could not bear the thought of a ‘passenger’ on the team and yet here I am, a passenger in my family and with my friends and I really hate that. People say I shouldn’t think like that which I know but thoughts just pop into our head, we have to deal with them and process them.
It becomes even more of a vicious place to be when I see my Lisa struggling to stay afloat with everything else, home, me, kids, work, her own health, broken promises of help from others and so on. Her parents doing all they can to support her round the house and my parents supporting with the hospital and helping Lisa whilst all the time fretting and worrying. Then there’s the kids – I’m not going to dwell on that as it’s too private. So many friends have been amazing and many don’t seem to recognise that things they have done have been real life savers – some of the biggest ones of these being the ‘private taxi service’ to and from the hospital which helped me and took so much work off Lisa. So many others who have cooked meals for us to go in the freezer, been there to put an arm round Lisa – a lot of the lads seemed to be very keen to do that, thanks fellas, I always slept easier knowing that!!!
It’s difficult to not feel a level of guilt at how much I’ve put them out and the line ‘Yeah, but if it was the other way round you’d do the same.’ might well be true but it doesn’t always help that feeling go away.
There’s more I could write on this but once again feel the word count is running away with me – I can amazingly write even more than I can talk – I know many of you thought that was not possible before you say it!!!
Once again seeing Sue is helping put this in perspective, not least as she is someone who has had the ‘When I was on the Atlantic’ story inflicted on her so she knows my views on passengers and as she pointed out, nobody has a choice when it comes to cancer or other such illnesses – you take the bullet and you don’t have a choice. Some can be better placed to survive the bullet through better health and fitness, age, previous experiences that have helped cope, whatever it takes to get back home through the door safely, capsizes or not.
I guess the last thing we covered which I will touch on here was finding a way to accept that looking into the future a bit more, be it at what might be happening next week, or next month or in the summer holidays is ok. Be gentle on myself and accept that is going to happen more and more despite still being on the cliff edge as I am feeling more capable and more healthy – acknowledge that it is a still a knife edge and that it is ok to dare to hope, to dare to dream as it is from our dreams and ambitions that we go and ‘do’.
The guilt is a new thing and like so many things over the last year will be something that I will come to terms with and deal with over a period of time; at the moment though the pain can be acute.
Anyway tomorrow, Thursday, I’m off to hospital for a hearing test which is part of seeing where I am at before I start liver treatment; then a visit to see my Consultant to get the latest overview with blood tests and so on and lastly a visit to the Infectious Diseases Ward where they carry out the ‘pentamadine’ lung treatment which has to be done in a room at a different air pressure so the drug doesn’t affect anyone else. It’s a bit nasty.
If you missed the Prologue to my book in an earlier post you can click here to read it now. In the meantime here’s the draft chapter 1:
CHAPTER 1: IN THE BEGINNING
These are purely personal insights of what happened during our genuine attempt to become the first boat in history to row the Atlantic in under 30 days and I am going to tell it how I saw it, confident that two thirds of the crew will be pretty much in agreement with my view, some may not!
During our trip we set a number of precedents for ocean rowing; perhaps the most significant of these being live radio broadcasts every morning on the Heart FM Radio Drivetime show, the biggest commercial radio station in the UK and part of the Global Radio group. The Heart network has 9 million listeners tuning in across the country every week and sometime after our trip Heart FM let us know that they had their best ever listener numbers for the quarter that included our time at sea.
The second thing was a device called ‘iPadio’ which allowed us to do live phone ins to our own website and these were immediately published as live audio from whichever crew member phoned in. This was brought into the trip by Mark Beaumont who strove to do these every day and they were predominantly delivered by him and his concise, deliberate reports give a great insight into life on board the boat as we progressed across the ocean, chasing the record, giving insights into conditions, morale, and ‘crew dynamics’. Mark was rightly proud of bringing this to the crew but as ever Simon’s quick wit added a laugh to the whole thing; when Mark had announced to us that he was bringing ‘iPadio’ on board, Simon, quick as a flash said, ‘So what’s that then Mark, a Spanish iPad?’ All of us laughed but I suspect Mark did not find it quite as funny as we did!
The first ipadio broadcast was from Mark ahead of us leaving for Africa and our ‘jumping off point’ in Tarfaya on the coast of the Western Sahara. Most of the subsequent ipadio reports were left by Mark Beaumont, Media Mark was another of his nicknames on the trip, as he was excellent at keeping the website, newspaper, twitter etc up to date. He described December 28th, leaving home day as follows with some insights into what was ahead. Remember that the words you read are a transcript of what the person was actually saying right there and then, (subject to bad reception and hearing properly what was said) this is not my recollection of things that were said and done with all the failings of memory, perspective and personal opinion, this is a personal account, live from the time:
Play the audio below with the transcript available underneath:
Mark ipadio 28 December Wednesday 16.42 hours 6 days to departure.
Mark, in the stern cabin where he normally broadcast from
Hi this is, erm, Mark Beaumont and it’s the 28th of December and it’s around about midday. Still in Scotland but the bags are packed and this afternoon I’m flying down to London to meet up with the rest of the team from where we’ll fly out to Marrakesh in Morocco tomorrow. Erm, these phone blogs are probably the best way to follow the expedition, we’ll be calling in whenever we have satellite coverage, up to once a day if we can. And I’m sure you’ll hear by the tone of our voice how well it’s going or even how tough it is.
We’ll be leaving from Tarfaya in Morocco and we’ll be out there all of January and the beginning of February finishing in Port St Charles in Barbados. Erm, the dream is to bring the world record back and erm, really to go sub 30 days, it’s been talked about for years; is it possible to row a boat over 100 nautical miles a day across the Atlantic ocean? And er, if the weathers with us and we can hold it together as a team er, then, then, then, that, that, that should be possible.
Erm, so do check back and er, be a part of the expedition er, there’s going to be a lot of information, you can track it online, you can see exactly how we’re doing, you can send us comments and feedback on the expedition as it happens.
A huge thanks to all the, the sponsors and supporters who have got us this far, I mean we couldn’t be at the start line if it wasn’t for all the backers. So erm, thanks to them and er, I hope that er, we can now go out there and er, and do our bit and bring the record back.
A couple of times Mark got lost with Si’s humour, the most memorable one being on our Day Skipper Navigation course we had down on the Isle of Wight with our weather guru and salty sea dog Stokey Woodall. We’d gone out for a few beers at Stokey’s local and Mark had been telling us one of his ‘When I did the world’ stories. It prompted Simon to jump in and tell us about a trip to Australia that he’d been invited on by a distant relative. Simon went into great detail as to how he got out to Australia, how had had to cross part of the outback to get to a remote hotel all culminating in the phone call he had with his Aussie relative who farmed in the middle of nowhere in the outback and details of his welcome party. The fella had phoned Simon and said, ‘Yeah look mate it’s going to be cracking party; we’re going to have a big barbie, shrimps and everything on it, we’re gonna have beer, tonnes of beer, we’re going have whisky and there’s also gonna be drugs and wild sex!’
Simon said he retorted, ‘Wow, er, ok well that sounds pretty amazing, what should I wear?’
His Aussie relative replied, ‘You can wear whatever you like mate, it’s only going to be you and me!’
At that point we fell about laughing whilst Mark looked slightly bemused until he said, ‘You’ve never been to Australia have you Simon.’
At that point we were all doubled up with crying and in pain from laughing as poor old Mark had not seen the joke coming at all!
Anyway both the ipadio and Heart FM transcripts and audio are brought to you in these blogs with the transcripts of the broadcasts and you can hear the audio just as they were broadcast from the boat out at sea. It is up to you to read between the lines over what we felt we could say, and what we meant as we described life on the ocean wave! You will hear how we felt as much as anything as you listen to the laughter, pain, fatigue, joy, heartbreak, depression and excitement in our voices. The impromptu moments as a big wave hit the boat mid-sentence, the emotion as a loved one spoke to us from thousands of miles away as we bobbed about in our little rowing boat, in a very big ocean.
Please note that the following text this is largely from my diary that I wrote on board the ship that rescued us and I say again it is merely my personal view of what went on from my perspective, if aspects are wrong I hold me poor memory responsible but would say my notes written on the rescue ship were comprehensive, the iPadio and Heart FM material is verbatim, as are any other interviews and blogs – all a matter of public record.
The story for me really starts back in 2011 when two ocean rowing boats were effectively racing head to head across the Atlantic to try and set a new world record; one was Team Hallin using a rather ungainly trimaran design, essentially a slim main hull with stabilizing outriggers and was racing against a conventionally designed ocean rowing boat, Sara G, a monohull with a larger rear cabin and smaller fore cabin. The crews had set off from different point, Hallin from the Canary Islands and Sara G from Tarfaya in West Africa – I liked that idea a lot as it was rowing from the mainland across the ocean rather than getting a few hundred miles head start setting off from the islands.
To set a record the average speed of any crossing boats are pro-rata’d to a set distance so it would all come out in the wash at the finish line – and that can be variable with some boats going to Barbados whilst others go to Antigua. Both Hallin and Sara G were heading to Barbados and it was clear that although they had started on different days the race as going to be ridiculously tight. Both benefitted from a massive ‘purple patch’ of perfect weather in the mid ocean that lasted for 12 consecutive days, subsequently the skipper of Sara G explained to me that they hardly had to row and were going faster than world record pace.
As it was Team Hallin rowed into the harbour first with a new world record under their belts, unfortunately for them Sara G rowed into the same harbour 12 hours later and broke that record!
It was those events that really captured my imagination, this was not just rowing across the Atlantic it was racing across it to set a new world record – now that sounded a world more exciting and captivating than simply setting out to row the ocean and picking up some sort of spurious world record based on how old a crew was or similar. To me World Records are about speed – there has to be an outright open speed record and then individual records or boat type of male or female crews, solo, pairs, fours, sixes etc. To be given the title of World Record Holders based on ages for example is not the point, you just have to get across for that and that is just doing it, not racing it. A bit like being the world record holder for the fastest London marathon runner dressed as a gorilla. Nah, not for me. You don’t get gold medals at the Olympics for being the fastest rower dressed as a gorilla or the fastest oldest rower, you get one for just being the fastest.
Whilst the boats were at sea I’d looked up Sara G not least as I had been looking at getting on board a boat with a guy who something of an ocean rowing legend. He had said about Sara G being too big and heavy to ever make a record and yet here she now was, holding the record. I’d had my doubts grow with this fella though when he was building a record crew and was changing from what looked like a sharp 6 man crew in a carbon fibre 6 person boat to a bloated 14 – 16 person crew aboard a massive 8 position sweep oar boat. As more details arose about his own financial difficulties it began to look to me more and more like an emergency money raising exercise rather than a genuine world record attempt. Let’s face it, excluding Simon as skipper, he was going to get the income from potentially 15 paying crew members at something like £15k a head, £225,000 versus 5 paying crew at £15k per head, just £75,000.
With the Revenue and bankruptcy authorities all wanting payment it seemed a clear decision to make, and I bailed out of the trip; a good decision as it turned out as they were at sea for ages!
So I’d pinged some messages to the skipper of Sara G, Matt Craughwell, to say what an epic effort it was and I was utterly gripped by their trip and keep smashing it. Plus, I’d love the chance to catch up with him when he was back to look at future options and crew opportunities. Matt was good enough to respond and said he would be in touch once he was back home in Hertfordshire in a few weeks time. I couldn’t wait.
That time seemed to go in a blink and it wasn’t long before I was sat at Matt’s dinner table one cold evening having driven down in my ‘hairdressers’ MGF car, roof off despite the cold, that was why I had a convertible, the roof was nearly always off, even in the rain, I just wore a hat. His lovely wife Helen had cooked up a nice dinner and we sat and talked ocean rowing; the options it seemed were to get in a boat the following June 2012 to take on the Indian Ocean record or to go later that same year or early 2013 and be part of an Atlantic crossing that would just be going across, not looking for records. That was kind of disappointing for me as I wanted to go for a record on the Atlantic was the ocean I wanted to cross, if nothing else it was something I had always dreamed of, rowing the Atlantic, not rowing the Indian Ocean.
The racing trip though would be on the Indian Ocean. I said to Matt that I’d be on for any and all sea trials which were double edged, to see if you were up for it yourself and to be tested to see if you were of the ‘right stuff’. At this stage I felt I had had my fingers burned with Simon Chalk on the possibility of going into a ‘money boat’ where really all you needed to get a place was the right amount of cash and the prospect of going into a performance boat where the crew was genuinely selected on the individuals capability not their bank balance.
Matt’s view at the time seemed to be that if the Indian boat covered all its costs then it could be less money per person as performance would be the be all and end all. The Atlantic boat was really for his company which ran all this, World Ocean Rowing Limited, to be able to make a good profit. That is all perfectly reasonable as at the end of the day he is providing the boat, resources, prepping it etc. etc. and damn well should be able to make a profit. Not least he is away from his own self-employed business as a heating and plumbing engineer for at least a couple of months and so can’t earn in that time whilst helping people like me realise their dreams of rowing an ocean for a fraction of the cost of the then Woodvale Atlantic Rowing Race.
My heart was set on the Atlantic though and I think it was around April time that I got a call from Matt to say a sea trial was set up as Sara G was back, we’d have to do some bits and bobs on her and then get out on the water for 12 – 24 hours with a couple of seasoned ocean rowers and me and another ‘newbie’. I was properly nervous of this; the crew had Matt plus another of the world record crew, Graham, a guy called Yaakov who had been to sea before with Matt on board a boat called La Mondiale that also used to hold the record although she had a ‘Pan Pan’ emergency and the crew had to be rescued. ‘Pan Pan’ is where you have an emergency but it is not a life threatening one, you need help, people will come, but they know you are not in really big trouble, that is reserved for the classic ‘Mayday, mayday, mayday.’
The sixth man was a big Irish fella who I warmed to straightaway; collected and measured, he had a great rowing background and not least was a big lad in good nick. Good first impressions. Clearly I can’t say what they were thinking the other way round but I could only hope that they were ok with me and I could only aim to make a solid impression out on the water.
Sara G was based at Rossiter’s boatyard in Christchurch, Dorset and I set off at around 5am for the three hour, 150 mile trip down to the boatyard. I was in my MGF and it was a beautiful day so roof off, no traffic early on and it was great, exciting, start to the day.
I duly arrived in Christchurch, spent a while finding the boatyard and drove in to see Sara G for the first time, perched up on her trailer with Matt on board doing stuff already and a couple of other guys involved and doing things. It was a nervy experience for me, were these other lads part of the record crew too? What was I even doing here? Just ordinary me, a river rower with no ocean experience at all, let alone ocean rowing and these guys full of experience and knowledge – then the penny dropped, they started where I was, and none of them was a river rower so like as not their rowing technique would be substandard, even the record holding lads. Maybe I’d be able to hold my own.
Anyway it turned out that a lot of what we had to do was get the boat loaded for going out to sea and sorting out some new foam padding to sleep on and other bits and bobs. The time came for a safety briefing which was essentially showing us the lifejackets, telling us how to put them on, we did not practice that, and that they would be tucked down in the ‘coffin bunk’ out the way unless we needed them. There was a brief chat on the EPIRB and as far as I remember that was it.
When I’d met Matt for dinner I had talked through my rowing experience and acknowledged that the sea would be a very different thing but that the physics to make a boat go faster were the same; I also was pretty insistent that I got to go in the stroke seat where I felt my rowing skills would make the most difference and not least I had a burning desire to stroke the boat across the ocean. I wanted to own that place and make sure it was mine. To be fair to Matt he was happy for me to do that and so we set off rowing out the harbour which was a laugh as I had not realised just how far from the sea we were. There was me in the stroke seat, a guy behind me who was a newbie and Yaakov in the bow seat.
It is a twisting and turning river that suddenly expands out into a big estuary that looks like you can take a direct route across rather than following the marker buoys but you soon realise that is never going to happen as we were still scraping the bottom with Sara’s daggerboard at times even in the channel. Unfortunately we had also got our timing wrong and the further we progressed the more we realised that we had missed the tide and eventually had to turn round and go back in to wait for the next one. Bugger.
It did give us all a chance to have some grub together though once we were back on shore and we were soon sat in subway chomping on ridiculously large sandwiches washed down with nice healthy fizzy drinks. This is where one of the lads came out with what I thought must be some sort of Walter Mitty type existence – maybe he was telling it for real, I just could not suspend my belief enough to take it on board. He had turned up in a car which from memory was a pile of junk (unlike my MGF!) but regaled us with a story about how he was a former stock broker who had a salary of £250,000 plus the same in bonuses, got fed up with it and joined the army to fight in Iraq and Afghanistan and had come out of that and was now looking for some form of adventure. He sat there in his aviator sunglasses with about as much meat on the bone as a stick insect I found him very difficult to be credible in any way.
My view was that the proof would be out on the water – anyone who is ex-army is going to know how to push themselves and we would find out on the sea, not in Subway.
As it turned out I believe my gut feeling was right; the poor fella could not take to rowing at all and was something of an uncoordinated donkey but also he had no power or commitment on the oars – dipped them in the water and got them wet but definitely no signs of power making the boat go faster. Not proof he was Walter Mitty I know, but…..
After the sea trial we came in with 24 hours under our belts and I felt I had rowed to the max for those 24 hours; in that time I had established a really good rapport with Yaakov and we worked well together with good banter too when we swapped out of our seats. Matt had done something different to what we’d ultimately do at sea where I stated off in the stoke seat and rowed for 40 minutes at which point I swapped out with the whoever was due in. The next man up rowed for 80 minutes and then he swapped out. After that the last man swapped out at 2 hours at which point I went into his seat. As such we all got a go in a different seat, be it stroke, centre or bow.
Early on it was apparent that the bow seat and geometry was odd and I don’t think we ever got to the bottom of why, partly as the first inkling of trouble over-ruled it in that when I brought it up I was told that this was not river rowing and the boat set up was not the same as a river boat because this was ocean rowing and you have to row round your problems. I took it as read. I was the novice here and Matt was the expert, but at the back of my mind it was a niggle as the boat should at least get set up perfectly irrespective of what water we were on so that we could at least have a chance of best performance. Even when we rowed back in and were on flat water of the estuary and the river the bow set up felt distinctly odd and was hard work to maintain timing with the stroke and centre seat. I could not pin it down, it felt like either the gates for the oars were set in a different place so you rowed through much more of the work and/or the heights were very different, maybe it was the spans which you could see were visibly different down the boat as the riggers and gates were not adjusted to the curve of the hull. Don’t know what it was, but it was very odd and clearly not right.
The other boat set up issue that was very apparent immediately was that the stanchions holding the safety bar in place hugely impeded length in the stroke seat. It was madness really that a boat designed for rowing clearly had fundamental set up issues that were blindingly obvious. The stanchions were vertical aluminium uprights that had a safety bar running for stern to bow to prevent crew getting washed overboard. The problem was that they were set in the wrong place to allow the boat to be rowed properly.
I’m guessing that as a non-river rower you would not even question it as you’d assume that is how it must be because it was built like that. That is the value of having people who genuinely understand rowing on board – you find the wins you can get to make a boat go faster for no extra effort. Just simply from doing things right, the same applied to pitches for the oars, gearing and even the spec of the oars.
The stanchions were rectified in the end as after sea trials and the personnel for the crew got narrowed down so the same thing came up from Simon Brown and Aodhan Kelly – the stanchions were badly placed and would have to be moved.
To Matt’s credit he took this on board got the changes made by Rossiter’s boatyard. Truth is, it should never have been like that in the first place and must have been a design fault but like a lot of ocean rowing boats at the time the actual rowing aspect of it did not seem to have had as much expertise applied to as them as they could have done. As I learned over time, there seemed to be almost an inferiority complex amongst a lot of ocean rowing ‘experts’ along the lines of ‘This is ocean rowing and not river rowing, the two are not the same and river rowing does not apply.’ Very naïve from my perspective, it was not so much about the concepts of river rowing applying but the years of experience in river rowing that had utilised the laws of physics to making a boat go faster. Those laws applied just as much to an ocean boat as to a river boat but just in a different way, so not paying attention to them properly was a sure fire way of building ocean rowing boats that could never reach their full potential, and lots of them were like that.
The biggest change to that would eventually come from a guy called Charlie Pitcher and his company Rannoch Adventure who have an attitude of leaving no stone unturned to make their boats go faster. Rowing set up, pitches, heights, angles, spans, gearing, spoon size, oar shaft size, all are important to Rannoch. At the end of the day if you are taking over 1.5 million rowing strokes to get across an ocean then why not make sure that at the very least the potential of each stroke to move the boat a little bit further each time is as high as possible by getting the set up right. After all, if that gave you one foot extra travel per stroke it is the equivalent of 284 miles….and that is an extra 3 or 4 days at sea. It might not sound a lot but for a record breaking crew it is everything.
Back to this first trial and I loved it! I loved the rowing, hours and hours of it in continually challenging conditions, striving to get the best stroke you can with the difficulties of the moving sea, the boat and not least rowing in a different seat each shift and all that went with that. I just loved it – the openness of the sea, albeit we were in sight of shore all the time (in daylight) and I guess not least the complete commonality with river rowing, it was in fact just the same in principal as river rowing just in rougher conditions, all the same things applied of aiming to get your legs on to take the work and get the most effective stroke. Length and poise versus the vagaries of what the sea and the boat were throwing up each time you tried to take a stroke, it was bloody brilliant and we were doing hours and hours of it!
It was clear pretty quickly too where the rowing technique lay in the boat; I was shocked and surprised that both Matt and Graham had pretty shocking rowing tekkers and would miss big chunks of the stroke even in relatively benign conditions as their catches were so slow, and that is coming from me, the king of the slow catch on the river. It was almost comical watching them get more halfway through a stroke before their blades were even in the water, and that’s allowing a lot of leeway for the boat and sea movement. The big Irish lad summed up the difference, he was so sharp on his catches, quicker than me and I did all I could to stay in time with him when he was rowing in the middle seat or stroke seat ahead of me. Yaakov was also surprisingly slow as someone with rowing experience but the gold medal went to Walter Mitty who just did not seem able to co-ordinate at all between each oar, holding the handles properly, and simply putting the bloody things in the water and applying any sort of meaningful power. No rowing coaching was on offer, you were dropped in at the deep end and had to crack on – if you made the grade then great if not you were out.
At the end of 24 hours we came in and I was shattered; I’d taken a view I was going to row to every shift to what I felt would be my max to survive the 24 hours. Every time I came off the oars I was drenched in sweat and blowing like a dog, and I loved that physicality and it was a little comical with all the rations I’d brought with me – malt loaf, wine gums, choccy bars, Doritos and pot noodles, the latter on Matt’s recommendation. I never bothered with them and it was always a case of shovel down the easy stuff of snickers bars, wine gums, Doritos, get a gallon of water down you and get some rest and. Such madness in a way but such fun and like I say I just loved the brutality of pushing every shift until you were hanging, brilliant.
I remember Walter Mitty commented on it at one point saying that the amount I was sweating indicated to him I was not fit and yet he could see the work going down which showed I was. I’d argue that if you have just spent 2 hours working your nuts off on the oars then you bloody well should be sweating like a garden sprinkler – if you weren’t then there may be a clue that you are not actually doing any work at all…and there was another indicator of work or lack of still to come.
We came back to shore and tied the boat off and got our kit off her. We headed straight for the shower block and all I wanted to do was sit down and rest, plus come to terms with what I had just done; my first time in an ocean boat and I felt like I had excelled. I had also developed a great relationship with Yaakov with good rowing and good banter plus good chat off shift – it was important to me to build these relationships and the same had happened with Matt. We had had a good time out on the water both on and off the oars and when Yaakov had described me as an ‘animal’ on the oars I was well chuffed as that is the sort of reputation I’d be happy to cement and I had worked bloody hard to make that happen.
Clearly Matt would be leading whatever crew would be finally selected and Yaakov was coming on board too so for me to make a good impression on the trial was massively important, I wanted to be in the boat and I was going to do all I could to make that happen, however much I had to drive myself and hurt myself on the trials to show I was properly up for it.
Me and Yaakov got in the shower block, still in wet kit, and collapsed with our backs against a nice big hot radiator, the heat was amazing and it was so good to sit and relax knowing that we didn’t have another shift coming up! We laughed at the state of our hands as well, still shaped like claws as though we were holding the oars.
One of the things that Matt had recommended was to get gloves – he’d sent a link to these things called Gil Marine deck hand gloves which were leather fingerless gloves. As a rower I thought these would be a bit lightweight as no-one wears gloves for river rowing but it would be reckless to not listen to the skipper so I’d come armed with my gloves. Being me I still thought I’d try without gloves to get a feel for the boat weight and the oars – very quickly I realised that gloves were in fact a great idea and at the end of my first short shift of 40 minutes I already had a nice set of blood blisters which were only ever going to be a one way street! It as the sheer weight of the boat, when you got hold of good strokes the amount of power you could apply was countered by the comparatively huge weight of the boat and so a lot of that power went into taking the skin off your hands really quite successfully. For the record, every shift after that I made damn sure I had my gloves on and despite that the blisters continued to grow nice and successfully until I popped them and was then into a world of puss, tape, antiseptic cream, blood and skin.
So as Yaakov and I sat there with our gloved, clawed hands we were trying to gently peel off the gloves without taking too much skin with them, they had all but welded to the exposed blisters with a mix of blood and puss and it was almost comical doing it. We sat there, stiff backs against a hot radiator, glorying in the horrible state of our hands and how hard we must have worked out on the water, however much they hurt there was that mutual bond that we knew we had done a good job and worked hard for the boat and crew.
We were then regaled by Walter Mitty, who had also just removed his gloves and made an announcement that he had not got any blisters at all. Funnily enough that did not go down well and although I don’t remember for definite saying anything out loud I’d be amazed if it wasn’t as me and Big Yak are sat there hurting and Jonny Lightweight has just announce that he has no blisters, I’m certain I’d have said out loud, ‘That can only be because you weren’t fucking pulling then!’ No wonder he had not been sweating.
The following week I got a call from Matt to say that Yaakov had said I was an animal on the oars – not going to lie, well happy with that description, and as far as Matt was concerned I would make the formative crew if I was on for it. I told him how much I’d loved every aspect of it and of course the rowing more than anything, that I just loved rowing and this was a new and almost purer form of it because you simply did loads of it and had the challenge to meet of getting the best from every stroke so relying on good technique was important to extract every ‘free’ inch you could get from each stroke.
I said to Matt too that the big Irish lad was an absolute rock and I’d row with him anytime. Matt shocked me with his response saying that the lad had decided it was not for him after all and that is a bloody brave decision to make I think. He’d no doubt have told people he was coming on a trial and had made the brave decision that it was not for him, something that can be harder to do than simply stay on board and not say anything. Something that would happen with one of our crew members. It was a shame to lose him, I just remember him as a top lad and a good oar.
Then Matt asked about Walter Mitty! In no uncertain terms I explained that I thought the guy was full of it, that from my perspective what he said was not credible and that followed through into the boat, he was just not a credible candidate for the boat, even if at this stage it was still a crew just looking to cross the ocean. It still would require everyone to contribute on their shift and this lad did not even know what pulling was so he was a non-starter as far as I was concerned. I said to Matt that for me he would be a deal breaker as I was not going to get into any boat, let alone one rowing across an ocean, with a passenger on board who could not even see he wasn’t pulling. I think a line was quietly drawn through his name then.
So, now from my perspective the crew was taking shape. I felt I had done enough and was in, certainly from what Matt and Yaakov said, and now I just had to make sure that I stayed in. I said to Matt that I would be on for any and all sea trials to continue to build my own experience and also if it helped to have input into whoever else may be up for the crew.
The subsequent trials strengthened the bond between me and Matt but it also, looking back, exposed me to a side of him that was less impressive and yet which I refused to acknowledge to myself as I was so obsessed now with making sure I was on board. However, I think we worked well together and had more and more conversations on what a final crew might look like, more technical things like oars and if Matt ordered new ones for the trip what should their specs be, shaft length, spoon size, that sort of thing.
Also coming into the conversation was more talk of this becoming a speed attempt rather than just a paddle across; the latter is all jolly nice and is without doubt tough too, but it is not racing, setting records, it is a combination of paddling and drifting across and making it regardless – not burning yourself to get the best result you can off the back of the best training and fitness you can smash in to make that happen. That was what really excited me and the more we talked about it the more the talk became about a world record attempt and even an attempt on the sub-30day record. This sort of talk was much more like it for me!
The next trial was in August I think and it saw another peg fall into the hole; an even bigger Irish lad came out with us by the name of Aodhan Kelly; another top man with a quiet sense of humour and a stoic manner. I can’t remember how long we went out to sea on this one but I’m sure we got some night rowing in as well as daytime, probably another 24 hour session.
We also had under trial an Italian fella who properly looked like an athlete – all buff muscles, tight tops, aftershave and sunglasses and a good lad despite that! Over the coming hours it quickly became apparent that Aodhan was quality all round, he could clearly scull well and had a great feel for the boat – as it turned out as a former Irish junior international rower you’d not expect anything else. He was great value, maybe a little heavier than he should be (!) but definitely quality both as a person and as a rower.
As for Jonny Italy the same could not be said; he seemed like a good lad but he was all but un-coachable as a potential rower; very stiff, falling into the common thing of trying to do the work on his arms and not his legs yet gripping too hard and in the wrong place to even use his arms. However many times we said about get his hands on the ends of the oars they soon slipped down again, grip, and so not be able to apply any power. The thing with the hands may not sound a lot but oars are set for a level of gearing that should make it possible to lever the boat around where the oar ‘spoon’ enters the water and the power of your body, using the leverage of the oar, will lever the boat round that point. The problem is of course is that if you move your hands down the oars as Jonny Italy was then you effectively change the gearing and make it harder and so make it harder to apply your power and lever the boat round the end of the oar.
It might not sound much but it is significant, if the leverage is wrong you will simply end up trying to lever a weigh that is too heavy for you – which means you are not applying work even of you feel like you are and as a result your team-mates have more work to carry. Remember again, it’s a million and a half strokes to row the ocean so if for any reason at all someone is not applying the work for whatever reason that will have a disastrous effect the further you go.
More conversations followed with Matt – once again I had loved the sea trail, loved the rowing, loved the physical and mental challenge and the challenge of rowing the boat the best you can in far from ideal conditions. Such fun.
We talked of the other candidates which were essentially Aodhan and Jonny Italy; Aodhan was quality and from my perspective a shoe in. Jonny Italy to my mind went the same way as Walter Mitty but for different reasons, he seemed like a good lad made of the right stuff but he just could not row and was un-coachable. As more and more talk was now on record breaking there was no facility to take on someone who could not row right here and right now as there was no time to teach them, being too inflexible to take on coaching was going to be too big a hill to climb.
Now we had four spaces filled and two to go. One of those could well get sorted on a personal recommendation to me. A good friend of mine, Ali Brown, Director of Rowing at Bedford Modern School suggested his brother Simon might be interested and to give him a buzz. He said it could just be the thing that Simon was looking for and so I left him a message to explain a little and give me a buzz if interested. Ali had explained that Simon was not only made of the right stuff, he was a quality oarsman and had in fact beaten Ali’s own Leander Club crew at Henley Royal Regatta in an unexpected result through sheer bloody minded grit and a determination to upset the form book. I today’s football comparison Leander Club would be the equivalent of Manchester City and Simon’s crew were more Accrington Stanley – no offence to either club, the crew or anyone in football!
I got a message back from Si and when we did eventually speak it was like we were long lost buddies; it’s fair to say that we ended up giggling about stupid things like a couple of school kids. Something that would not really change during the course of our growing friendship which carries on today.
So the next trial Simon joined us, turning up in his near death black VW Golf which made my MGF look good, some trick, and we hit it off immediately, the phone calls were just the starter! I can’t remember how long we were on the water on but I do remember that Simon suffered spectacularly from seasickness but cracked on regardless. He was a machine and maintained a superb sense of humour through it all.
The sea trial ended with us trying to run the boat in as the tide was on the turn. We nearly made it but as we turned into the entrance of the river mouth you could see that the tide was running out and so it was going to be an attempt to row ‘uphill’ against the outgoing water. I think in this trial we also had an American fella on board, he’d brought some slightly eccentric supplies in the form of Sainsbury’s assorted sliced meats and salamis plus a four pack of beer! He had some power though and it was him, Aodhan and Si trying to take on the tide. The lads inched their way against it but it was clear that this was not going to work as it was not just about these first few hundred yards but all the rest of the distance back to the boat yard with outgoing water.
The lads battled away and in the end I said to Matt that this was impossible and was simply not going to happen, it was a slightly odd decision to even give it a go as taking on the water was never going to be a winning situation!
In the end we ran the boat aground on the gravelly bed and waited for the tide to turn; even then we had issues as when the time came to try and get off the gravel the incoming tide would sweep the bow round and back aground. The bow side oars could not get any power on to swing the bows round as they would scrape on the gravelly bottom and after numerous attempts I said to Si in the bow seat that I’d jump over the side and pull the bows round until they were right on the edge of the deeper channel, he said he’d row like hell with his bow side oar only and see if that did the trick. We hauled in the anchor, I jumped over the side and pushed the boat round in knee deep water and as soon as it was getting deeper and coming up to my thighs I scrambled back onto the bow and out of the way of Si who was using his sculling blade like a sweep oar and laying down some big ones to get the boat to come round the last bit. Success! We were off and could now head back into the boatyard! The lads were knackered so it wasn’t long until we swapped out and the other three of us rowed the boat back in.
It reminded me of another incident when one poor fella and again I can’t remember their name, and even if I could I wouldn’t use it, but it shows the extremes you had to deal with on the boat and if things went wrong they went wrong in fairly spectacular fashion. I do remember the guy being quite reserved but he was a nice chap who quietly got on with the business on rowing in a competent and determined manner. He wasn’t the biggest chap and as far as being part of the engine for a world record attempt I just don’t think he would bring enough horsepower to the crew. When we came in from what had been a fairly brutal sea trial with tough conditions and a real need to push on as hard as we could and catch the tide there was quite a lot of stress in the boat. I don’t think the guy was well at all, be it from the sea, actual illness, or pushing really hard; he’d puked on the deck and had had to retire to the cabin – we sloshed his puke off which should have been down to him to sort but it showed how much he was suffering and that was to get worse for him.
When we got back in and as usual hit the shower block he came in a few minutes after all of us. At first we did not notice anything untoward until the smell started to creep into the block; this was followed by the fella stripping his waterproof top and trousers off and in his t shirt and shorts heading for the shower cubicle – with his legs covered in his own faeces. It was pretty nasty and the poor fella had no choice but to just get on with it – nobody said anything from memory as that is such an awful position to be in. Looking back, I guess out on the water he had literally been busting a gut and went beyond the limit, quality.
So Simon was on board; he would be invaluable on the Atlantic crossing for his temperament, sense of humour, complete willingness to help others around him and was also top quality on the oars, a really top oar. This looked like another peg in the hole and the subsequent phone calls with Matt summed that up too.
This was a it like ‘The Magnificent Seven’ – except there was six of us! We had five on board and there was just one space left to fill……
After a bit of a delay on my drip treatment as I had to have an increased dose Lisa and I headed up to the Vascular and Radiology Department for 3.30 instead of 2.30…..and by 4.40 we were out of the car park and driving home!
They got me in almost straightaway – allowed to keep my trousers on but a gown on top before going into theatre and it was a Senior Nurse carrying out the procedure which they assured me was going to be so much easier than putting the line in.
They did say (jokingly I think) that it might take some tugging to get it out as it had been embedded in me for 50 weeks and extra tissue would like as not grown around it.
The procedure involves two injections of local anaesthetic which was actually the worst bit as it is a ‘sharp scratch’ with the needle and it stings a lot before it takes effect but that is only a few seconds.
The nurse explained that there is a ‘cuff’ on the line which is the red bit in the pic that is there for tissue to grow around/into to keep the thing secure and that could take a bit to pull out – it did and although it did not hurt you can feel the pulling – that bit is inside you. The bit next to that on the right up to what looks like a small black ring is also inside you and the black ring is the point where it comes out – in the pic below the point where it comes out is the red blodge below the small dressing.
The last bit which came out very bloody is the length of line that is actually inside the vein that leads into your artery and it is that and the bit with the red cuff that they have to pull out through a half inch cut they make in your chest – which is under the dressing. Each bit is clamped off to stop the blood spurting out everywhere and removed a bit at a time – the long bit with the three other lines (lumens) on it which just pulls out easily then some fiddling bout, loosening, snipping to get the bit with the collar on and lastly the long bit in the vein.
That is simply pulled out with the surgical equivalent of pliers and then pressure (quite a lot of it) is applied to the vein until blood stops coming out of it – again you can feel that pressure for a while which is uncomfortable until they are confident it is not leaking. They were a lot more confident than me, I have a pHd in being anxious at the moment which is why I’m seeing the counsellor.
I’ve named the line Larry only now that he is out of my body and got to bring him home – apparently nobody had ever wanted to bring one home and frame it before – how weird?!
So it has to be a step forward getting Larry out; my blood results were good today but the knife edge is still there and we have my bladder, kidney and liver still to address which could take a year yet.
After 50 weeks embedded in my chest my ‘triple lumen Hickman line’ is coming out tomorrow, scheduled for 14.30.
First of all I will have my last treatment through it which is immunoglobulin (IMg) antibodies to help boost my immune system.
Post transplant you have no immune system to speak of and effectively your body is taken back to the equivalent of a baby with the relatively small amount of donor cells introduced. That means all the immunities we build up over time no longer exist and at some point soon I will have all the normal childhood innoculations again.
In the meantime that comparatively small amount of cells are trying to produce red cells, white cells, platelets, neutrophils etc for a 6ft 1inch body instead of a baby sized body so it is hard work and they have to have time and support. It is pretty normal for the IMg transfusions and this will be my third session I think with a full dose this time as I have not had any previous adverse reactions. I will be on the drip for nearly four hours then head up to surgery to have the line removed.
After today any further IMg treatment will require a needle and canula in my arm but that is not too much of a problem as it should only be every three weeks so the veins get plenty of time to recover. Additionally as I attend Clinic every three weeks now instead of weekly I only have blood taken off every three weeks and so again there is little pressure on my veins, and having lost a lot of weight my veins are easy to access – the best compliment I get in hospital is ‘You’ve got lovely veins’ but then I’ve learned to take the wins when you get them, whatever they are!
Pick a vein, any vein!
Back to the line though, and at the time it was put in I was so scared and all of the assurances that it was a minor procedure and that the surgeon had done thousands before without a problem and was an expert unfortunately counted for nothing for me.
Two years previously a cocky, arrogant surgeon (just my opinion of course!) had been saying the same thing about the minor operation he was going to carry out on Lisa and that there was nothing to worry about as he was a brilliant expert, had done thousands of them and there would not be a problem….yet ten hours later instead of being at home Lisa was being rushed into emergency surgery on the point of death as the surgeon had made grievous errors – sticking a verres needle through both sides of Lisa’s stomach, and two if not three parts of her bowel.
She had put up with the excrutiating pain of stomach acid and bowel contents leaking into her abdomen for 10 hours while the ‘brilliant’ surgeon refused to accept that there was a problem.
Fortunately Lisa’s life was saved by a genuinely brilliant surgeon after four hours of surgery, flushing her abdominal cavity of half a litre of blood, bowel contents and stomach acid and sewing up all the wounds. Eight days of intensive care followed and we nearly lost her at least three times, a further week followed on a ward and still today she carries the physical scars and mental scars of the surgeons mistake. So, no, I was not assured at all and once we had relayed Lisa’s story the chap inserting my line understood fully why that was and to be honest was then brilliant at handling the situation and as the procedure was utterly trouble free, he was clearly very good at what he did, taking suitable care and attention.
Unfortunately/fortunately I am now in the position that the line has to come out – so it is another ‘minor procedure’ of which the surgeon has done thousands – funnily enough that is still of no comfort despite the successful yet painful endoscopy operation I had a few weeks ago via my Gentleman’s Appendage.
The line enters your chest and is then run through to the main artery above your heart so that whatever ‘fluids’ have to be introduced into me would go straight into my main bloodstream and be distributed quickly in the flow without damaging the smaller veins in your arm or hand if a cannula had continued to be used.
I have got so used to the line being used and it is all very straightforward – it actually feels more safe having it in than imagining what it will be like having it taken out. Yet keeping it in still means having the three lumens flushed out and the dressing changed once a week and when hopefully the only use will be the three weekly IMg treatment which is all very benign, certainly compared to the vicious chemicals of the the chemotherapy.
Not the healthiest way to lose weight – but it does prove the adage that if you put less in than you need you WILL lose weight! Easier said than done though…
Having it removed will also allow me to do more physically – maybe soon even get on a rowing machine or go for a light on/off jog. I’ve done a fair bit of DIY stuff and gardening stuff recently and am still recalibrating what overdoing it means.
But the thought of a light, 5 min erg cheers me up a lot as does a 20 step on 20 off 200 step jog!
Not least I will be able to have a proper shower without worrying about getting the dressing and line entry point wet. The latter will be a real joy once the removal wounds have healed, for me and for Lisa!
It will also be a final goodbye to the brutal chemo which had to go in via the line and which has so ravaged my body since treatment started. OK, so in theory I could have done with weighing less at the beginning of all this in normal life but I am glad I was a chunky monkey, indeed in terms of body fat percentage I was a proper fatty as my percentage was 28% – that is actually obese and for me that is a statement of fact. No-one could ‘fat shame’ me as I knew I was fat and looking back I’m pleased I was as after my transplant I barely ate a single thing for four months. Literally nothing and often what I did get down I would throw up again; in hospital the feeding tube wasn’t so good either as I could feel the fluids going down and it made me gag…..there is an un-said ‘Ian-ism’ there!! I was like something out of the Walking Dead and just do not know how Lisa held it together with me at home most of that time.
Anyway, the line is now coming out – yes, I am a bit panicky at that thought and yes, I can’t wait and that is the nature of this bloody thing. An ongoing conflict in your head on so many things and much like the ocean you just have to find a way to ride it out and take the next stroke – the weather may be forecast to be better tomorrow but it could just as easily be even shittier – take the next stroke, just like in normal life, and if that doesn’t help go have a nice warm shower!
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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.
I’m trying something different with this post, feedback welcome as it’s on a lighter note – and as I say to my kids, ‘Well I made myself laugh’! or to annoy them even more in a text I just send IMML!
This will be best with sound by the way.
I’ve generally relayed only events in the hospital or directly to do with my current predicament but I also want to be clear that it is not all bad by any means. Not least the constant love and support from Lisa, having our Lily buzzing around the house being rude to me, keeping in touch with the other kids away at Uni and work and their shenanigans. They all give a positive boost but to be honest, and I hate to admit it, one of the main sources of comfort has been the bloody dog!
I’m at home on my own a lot as Lisa tries to juggle a million things with home stuff, kids, work etc and her/our dog is often the only source of companionship I have and it has made a difference. She is quite anxious if I am struggling and will buzz about me which can be a pain but is equally a nice thing. Or she could be doing something really daft like worrying other animals….
You can see that Bella is without doubt cute but she still has her failings like any dog….for instance oh how I laughed when she found a rotten egg to anoint herself with and stank horribly so it was straight in the shower for a clean up which I’m sure she loved.
Rotten egg – the equivalent of Hugo Boss for a dog
Post shower – she despises me!
However all things are put in perspective and my day and night as you know revolves around going to the toilet every half hour or so and during the day I try and get little cat naps after what is always a pretty sleepless night. Add in that I also have to measure the amount of wee that I produce every time I go and each wee then goes into a bowl so I can see how much overall I am producing, how much ‘matter’ is in it, and what colour it is to have a good idea of my hydration – it’s so glamorous!
So that was often my day, having some laughs with the dog, going for a wee and measuring it all and getting the occasional sleep. When I sleep I always dream and often they are far from relaxing and can be quite torrid although one day I dreamt I was back out on the ocean and lying in the stern cabin on a pretty calm day listening to the water running alongside the hull of the boat, something like this:
I think you know what is coming next…….I woke up and could still hear the water running alongside the hull of the boat, at first I was confused and then the penny dropped……’Bella!!!!’
She was clearly thirsty and fancied something more ‘meaty’ to drink rather than her bowl of water!
Disgusting bloody dog, but she does make me laugh and compared to some of the things I’ve had to do during my time in hospital and subsequently the dog wasn’t that horrible by comparison; for example after my transplant every wee and every poop had to be done in a bowl to be tested for infections etc. and for some weeks you have very loose bowels and with my bladder infection I was weeing blood.
So, Bella disgraced herself again and spent a while in the dog house, well, asleep on the sofa in the conservatory, probably dreaming with something just on the tip of her tongue…..bless her!
There is a countdown to me not using FB anymore and if nothing else I find this method more amusing and more therapeutic as I get to write more – makes up for not talking at people so much!
Please feel free to come on board with the subscribe via email below and as we go through different anniversary dates from just over a year ago I will flag those up, write about new stuff and add in some other anecdotes like the one above. Most of you know me well enough to know what to expect, it won’t be politically correct and a good part of it is like as not going to make you wince but I have to keep rowing the boat.