Cliff edge, stumbled

Keeping this brief – over the last few months I’ve developed a lump on the top right of my skull which is getting on for the size of half a goose egg.

On the inside it’s about half a chicken egg.

It’s really quite painful, also causing headache, toothache, earache and eyeache.

After various examinations and scans I’m in hospital tomorrow for a biopsy under local anaesthetic.

I think subject to the result of that I might be in on Thursday to have an attempt made to remove all/most of the exterior and interior lumps. I’m guessing they want the biopsy result before committing to operating – that in itself is scary.

Apparently there is some bone erosion which is indicative of ‘aggressive behaviour’ but we do not know the nature of the lumps until the biopsy.

The above is EVERYTHING we know right now apart from that we’re very frightened.

PLEASE resist the temptation to ask lots of questions – we have no answers and are in a very stressful place because of the above and some other issues.

Let you know more when we know more.

 

 

Ian & Lisa

 

xx

Speaker One Sheet – please help!

First thing – I’m sorry if you got a number of test emails yesterday….I didn’t press the right button for testing and they went out and shouldn’t have done.

Today’s should be out!

It’s scary starting to do ‘normal’ things as it almost feels like I’m letting my guard down with ‘luke’. However it’s time to move on and stop being a patient and start being part of the human race again.

Not least I have to start contributing to the home budget and take a little bit of pressure off Lisa.

So, if you can, please help. I’m looking for almost any opportunity to speak at the moment to get myself back up to speed. It could be corporate, associations, trade groups, networking groups, charities, schools – at present I’ll take just about anything!

Below is a jpeg (as I can’t find a way to put a jpeg on here!) and below that is a link to the pdf plus a link to the testimonials.

Ian Rowe Speaker Info SEPT

Testimonials

I know you’ve all backed us for so long on what has been a really tough 18 months and there’s a way to go yet. I might be asking too much with this, but if I don’t ask I won’t know!

Big thanks,

Ian

Working…nearly!

I mentioned before that I am looking to dip my toe back into the waters of actually doing some proper work which for me is getting back on the speaking circuit. This is a scary prospect as it is doing something ‘normal’ and my mind ends up in overload of ‘what ifs’; what if I let my guard down, what if I stop being a patient and return to the human race, what if I tempt fate – it’s scary but I’m told it’s also normal to feel like that, so I’ll crack on.

I have spent a fair bit of time thinking about how I might incorporate my challenge with ‘luke’ into the story of our Atlantic shenanigans and how the lessons learned from those relate to ‘normal’ life.

In addition it has meant a little shift away from ‘Atlantic Experience’ to ‘Ian Rowe, Inspirational Keynote Speaker’ with a revised logo and some text tewaks to the website, my Speaker One Sheet and my Introduction Card.

‘Luke’ turned up just as I had provisional bookings for proper fees for different international events and so although I am not starting from scratch as before I have gone backwards and want to get moving forwards again and not least contribute to the family budget if nothing else to try and take some weight off Lisa.

At present therefore I am looking for almost anything; I need the practice to see how best I can incorporate aspects of ‘luke’, re-train my voice to speak to larger audiences be it with or without a microphone and not least see that I am physically able to get to an event, deliver my talk, and get home again without being wasted for the following few days. Having said that, I don’t mind too much if it wipes me out for a few days so long as I deliver up to standard at the event.

So, firstly at the moment the website has had a front page re-vamp which you can see by clicking here

Secondly I have had my Speaker One Sheet updated and you can see that by clicking here

I’d be very grateful if people would have a look see and let me have any thoughts/comments via email:  ian@atlantic-experience.co.uk

Next on the list is to carry on working on a Q & A script for a ‘showreel’ video which will be used to sell me and my speaking work – something that will need to grip people within say 20 seconds and get my message across in around 1 minute…..hmm, me taking 1 minute to say something! Big challenge ahead then!

On the health front things continue to move forward and I have been prescribed two new drugs for my bladder which are meant to help relax one of the bladder muscles to make going for a wee easier and the other is to help reduce bladder over-activity and so reduce the frequency of weeing. There are side effects and it feels like I have acquired a good number of these which have overall made things worse. They include nausea, stomach cramps, diarrhoea, headaches, dry throat, dry eyes and dizziness/fainting when standing up particularly from lying down.

From my perspective the issue with my bladder is not over activity but simply capacity, although I have produced some much bigger wees (150ml which compared to the average of around 75ml a month or two ago is a massive change) and have had gaps very occasionally of up to two hours with little or no pain. So having a drug that reduces bladder over-activity seems pointless as my bladder is not over active, it is just reduced in size from the inflammation. If I’m producing 150ml and I’m sure I even saw very nearly 200ml it would seem it is finally making progress all by itself. Both drugs have similar side effects and I’ve been on them for just over a week now. I will persevere this week but will be asking for them to be dropped as the side effects outweigh any benefit.

Looking forward therefore to seeing my Consultant a week on Friday and hoping he will say I can ditch these new drugs….

Dr Charles Crawley – my Consultant since all this began. Him and his amazing team have been incredible.

 

Tomorrow I’m in hospital for a scan on my left kidney to see if that has recovered at all in terms of its function so have a massive fingers crossed time for that. The scan is pretty straightforward but they have to give me a diuretic beforehand which last time saw me going for a wee every five minutes so not massively looking forward to that, but hoping there is some improvement. If it has deteriorated since the last scan there is a chance my kidney will be removed and I really do not want that.

Thursday will be a day in hospital for regular IMg treatment – this is to support my immune system and help it get back on two feet and next week I will find out how that is all going as my blood tests for clinic will include testing my immunity plus also testing my ferrite level. The latter is the iron overload from so many blood transfusions and is why I have the self administered iron chelation treatment 5 days a week which is a needle into the flesh of my tummy and an 8 – 9 hour infusion overnight. Really want to see the back of that too as my tummy is getting sore all over and I can feel lots of hard lumps under the skin where the needle has gone in and the drug has been slowly pumped in. Unpleasant. I think I must have done this 30 + times but it is still horrible but I suspect I have some months of it to come yet.

Finally, for things in hospital, I have another ‘Gentleman’s Sausage’ procedure due next Monday to go back into my bladder, remover the stent they put in a few weeks ago via my back, take a biopsy of the ureter between my kidney and my bladder and insert a new stent. Not looking forward to that either but I guess it needs to be done but it will mean another week or so of razor blades and broken glass!!

Think that is generally it for the moment, up until I started the new drugs I was beginning to feel relatively normal and had got out and about a bit to see some old mates and even have a bit of a business meeting with a great idea put forward by a friend who has heard me speak before about how I might bring in the ‘luke’ story a little bit. See the pic below, as Martin pointed out to me our rowing track on the ocean crossed the Tropic of Cancer – now  quite topical so the heading would be ‘Atlantic Rowing and the T(r)opic of Cancer…..I liked that idea!

Just in case you are reading this as you’ve picked it up from social media, please do take a moment to sign up to the blog using the email subscribe box at the top right of this post or below.

 

 

 

Teamwork

Without a doubt the best team mate I could have had in this is Lisa. She has been amazing, amazing beyond comprehension really as she had only just come off the back a a spell in hospital herself where she so nearly lost her life due to the surgeons negligent error. He wrote to us to say that we needed to understand that he found such things just as difficult to deal with as Lisa did…..w@n#er.

Anyway, Lisa ended up with 8 days in intensive care, at least another week on a ward and then months and months of recovery both physical and mental as she had suffered terribly with ICU psychosis brought on by the drugs, let alone the internal injuries to recover from. The self styled brilliant surgeon had stuck a verres needle right through her stomach, through part of her bowel, then another part leaving her for around 10 hours in excruciating pain as blood, stomach acid and bowel contents leaked into her abdomen. His stance – it can’t be that bad as he never makes mistakes.

Just after this I was diagnosed with Essential Thrombocytaemia – now considered a type of blood cancer and given the option of a treatment that would stop the ET killing me but could propagate the onset of Acute Myloid Leukaemia. So as Lisa slowly recovered we were already living under something of a shadow of the ET and the possibility of AML.

In March 2017 my blood results started to change markedly and I was diagnosed in April with a very nasty form of AML. Lisa was well recovered by this time but still suffering with both physical and mental effects of what went on – the latter are so easy to overlook and we often hear about Post Traumatic Stress in soldiers and I used to think that it was the sole preserve of the armed forces and to a lesser degree the police and emergency services. Now I realise it can be any of us.

Over the coming months as we seemed to be hit by bad news after bad news from how ill I was, to damaged chromosomes making the likely survival rate being 75% against, the brutal types of chemo that could kill you quicker than the disease and so on, and yet Lisa was always a bloody rock.

She had to carry me, almost literally at times, she had Lily at home, she had to try and keep the other kids up to speed – sprinkled round the country at Uni etc, my parents, her parents, run our businesses and look after herself. Those of you who know Lisa will know who came last on that list and yet she stepped up time and time again. Beyond description and belief, she was off the scale amazing and still is. Beautiful, inside and out and of course had plenty of her own moments on the floor in bits, sobbing and crying as it all became too much but not with a hospital full of staff around her to help.

Please all remember that this is beyond tough on Lisa – she has to an extent lost her life and even her own identity; it becomes really hard work on here when people, out of concern/kindness ask her about me and what might be going on, be it health or a first speaking job. Please, please remember that she needs all the love and support that is going too. If you want to know about stuff on my side, please, ask me. With Lisa, maybe ask how she is, send her a card, a little present, a text to say she’s great. Above all, please avoid doing nothing even if you’re not sure what to say. Just say something. 

Step in her mum and dad, Ian and Val. Apologies for the rubbish pic but I love this pic as it shows what they are like together, smiling and laughing so often and standing by Lisa on an almost daily basis when she needed it most, helping with shopping, washing and ironing, being there for Lily from school, cooking, hoovering, DIY jobs and so much to take the weight off Lisa and allow her to drive back and forth from the hospital to come and see me. For me that was invaluable and for Lisa it was such hard work – get Lily off the school, jump in the car for the 90 minute (if she was lucky) drive to hospital, a couple of hours with me, then back in the car to be home in time to be there for Lily home from school, cook dinner etc etc.

So I guess to sum up Lisa has basically had four years of hell and even before her surgery had months and months of fear and worry over what the issues were requiring the exploratory surgery which in medical parlance was to ‘establish if there was something sinister’ going on. Silver lining, there wasn’t anything but the surgeon nearly managed to kill her anyway through his negligence.

For the record, that was the conclusion of the NHS investigation some 18 months after the event, not just our opinion, which it vindicated.

The worry and pain for family is something I think about every day and it was a chance to say a tiny thank you to our parents and kids when we had a family party to celebrate the first birthday of ‘Jonny Canada’ the name of my stem cell transplant as all we know is that it came from a Canadian fella. I swear I have a desire to wear check shirts and cut trees down!!

My mum excelled herself with a ‘Jonny Canada’ birthday cake and Sophie and Tom even bought him a birthday card!

Doc Crawley – this was at the end of my clinic visit on the same day as Jonny Canada’s birthday.

Of course the biggest team supporting me has been the medical team both at Nuffield Hospital and at Addenbrookes. The Nuffield team got me through the first two rounds of chemo and then it was into Addenbrookes for Chemo 3; they had said the first two would be brutal…..but they were a walk in the park compared to Chemo 3 and the prep treatments which were off the scale hideous. From the start of treatment to transplant it was 4 months – it is now a further 12 months of treatment to try and overcome the horrendous complications, infections and so on that arise from Chemo 3 and immune suppression etc.

From the start the hero for me has been Doctor Charles Crawley. When Lisa and I first met him I felt great as he was like a top coach, simple and direct (something that always helps with my small brain!). He explained where we were at, with a ‘very dangerous disease’ and where we needed to get to, cured, and how we could get there. There was no dressing it up, no messing about, and within a week of seeing him I was being admitted to Nuffield and the start of treatment. I think it’s fair to say that Lisa was at first less keen on Doc Crawley because of his direct approach but as time went by and we all go to know each other so much better she too placed him up on the podium where I had put him!

Of course the Doc is the leader and the team he leads is massive, and they’re brilliant. Jo his right hand nurse on the transplant team (I think that secretly she is Addenbrookes Chief Exec!!) and all the other nurses in the Oncology Unit, the other Doctors and nurses on Ward C10 where I was in Addenbrookes, the nurses in the Addenbrookes Haematology Day Unit and of course the oncology nurses at Nuffield and the regular nurses on the ward there.

They have all played their part in keeping me alive to date as have so many friends who have also supported Lisa when and where they can. Without them I’d be dead.

Above all that though, as Doctor Crawley said to me, the family is the really important team and Lisa is the Leader!!

 

 

 

 

 

 

Past few weeks review – ups and downs

The last few weeks have as ever been somewhat up and down but as a good friend Tony pointed out, where I am now is a very, very different place to 18 months ago where I was right on the edge of dying and if I was offered how things are now for what they were then, I’d rip your arm off. So, whilst I still have times especially in the middle of the night going for the 10th wee trip of wanting a one way ticket to Beachy Head I have to remember it could be a lot worse.

If the wheels do come off, I want to be able to look back and think at least I made the most of the days that I had. Importantly, this week is a massive milestone as I can look back and think of the year that I have had since my transplant.

‘Jonny Canada Day’

On 31 August last year a total stranger from Novia Scotia, Canada saved my life. That is all I know about him. Someone who for some reason found the courage to sign up with Anthony Nolan and then when the call came, stepped up to make a stem cell donation. Like all other donors, stem cells, blood, platelets, organs – what a bloody hero, saving the lives of total strangers who they will never know.

We were planning to have a birthday party for Jonny Canada – the name of my stem cells but the last few weeks have been really quite difficult with various procedures, feeling rough etc and so we have opted for a family get together but a massive thank you goes out to all those people who have so closely supported us whether it be lifts to the hospital, being good mates calling round, being there for Lisa, making meals, looking after Lily, our parents, the kids. People we hardly know who have extended their friendship and taken the time and trouble to be regularly in touch and send their best wishes when we know so often they all have their own stuff to deal with too. Amazing.

So, Friday 31 August is a visit to the hospital for clinic for a regular review and then it’s back home for a family get together and Jonny Canada’s birthday cake, made by my mum – picture to follow next time!

Tough Times

Over the last few weeks I have been  back in hospital for another procedure on my Gentleman’s Sausage which was roughly the same as last time except that they were looking for the point where the ureter enters my bladder from my kidney. Unfortunately, despite digging around in there they could not find it and whilst in there they took biopsies as well, the reason for finding the ureter was to take a biopsy from that as well and insert a stent to allow proper urine flow from my kidney into my bladder.

This was news to me as up until now I had thought we were looking for options to improve the inflammation in my bladder to increase its volume and so reduce my weeing frequency. This turned out not to be the case and the week before the Urology Doc had broken the news that my kidney function would have reduced further by now and could be at a stage where my kidney failed and would need to be removed….WTF?! When he told me this I broke down in tears with my head in my hands as it was a totally new thing to me – at no point before had kidney failure been on the agenda. To make it worse the urology doc subsequently wrote to my GP to tell him what was going on and that if, understandably as he put it, I had not delayed the procedure then my kidney would have had more chance of being ok. This properly made me angry as even I would have gone ahead with the procedure straightaway if I had known my kidney was at risk. Anyway, it is what it is now so we shall see.

Unfortunately they could not get the stent in and after I had come round from the general anaesthetic I had a very painful bladder and sausage despite plenty of oral and intravenous painkillers. They had also opted to insert a catheter which turned out to be amazing once I got used to it and although I was pissing blood and there was a lot of pain it meant that for the first time for a year I didn’t have to pee although plenty of blood was being passed. Amazing! The downside from the failed attempt was that the following day they would access my kidney via my back and attempt to get stent in that way. Haha!!

During the night I slept for two straight hours and was only woken up for nasty anti coag injection in my tummy – I remember them from last year and still have the bruising from them – but two hours sleep was amazing and after that I had a three hour sleep – just amazing.

After the first procedure’s failure the following day was the second attempt which was something different altogether. I had to lie on my front and have 5 lots of local anaesthetic injected into my back above my kidney, each one a bit deeper to get anaesthetic down through all the flesh and muscle.  I didn’t enjoy those but once they were done things were quite a bit easier. I also still had my canula in from the previous day so they gave me a decent dose of morphine which also helped and said I could have a second dose when they got started but to hand on until I really could not bear the forthcoming pain I would have from the forthcoming procedure……encouraging!

The next step was that they inserted a large needle/tube through the flesh and into the urinary part of kidney which I could feel happening but wasn’t too painful although it started to go downhill from there. The next step was to insert a flexible wire through the needle into kidney, down my ureter from kidney to bladder and wiggled round in bladder to make sure sufficient wire was in there. I could definitely feel this and the Doc, who was amazing, had cautioned me to really grit my teeth until I really felt that I could not stand it anymore as once I was given the second dose of morphine that was my lot. The pain was magnified as my catheter had been clamped and fluid was also piped into my bladder so that was under a lot of pressure to the point where I said to the Doc it felt like it was going to burst open. He said to not worry about that and took the view that I had reached my pain level and so the second dose was given to me. It made a big difference but was still pretty uncomfortable and painful. I did use some interesting describing words and at one point it genuinely felt like I was going to uncontrollably poop myself – the Doc said that they had seen everything in there and that had happened before but do my best to hang on as the feeling would pass. I had had enough humiliation with my Gent’s Sausage being out in full view in the operating theater and pooping myself was just not going to happen – fortunately I kept it all in!

The next stage was to push the stent down over the wire to guide it into place in my bladder and I could feel this going on, it wasn’t pleasant but wasn’t too painful apart from when the excess was pushed into my bladder and once in the wire was pulled out successfully leaving the stent in place. The needle in my kidney was then removed and a dressing applied to the entry point – all done! As the Doc said my acute nerves and fear going in were all about the unknown ahead of me and once it was all done it wasn’t so bad afterall.

What also made the whole thing more bearable was that both Doc’s doing the procedure were quickly aligned with my inappropriate and terrible sense of humour and the it soon turned out that the whole event was ridiculously fertile ground for double entendres which the two Docs eventually joined in on. At one point the whole thing was put on hold after one of the Doc’s said something along the lines of ‘Ian you should just feel some pressure, you won’t feel the prick but you might feel some fluid run down your back.’ We all started laughing and had to call a short stop until we were all back under control and could proceed.

After it was all done they broke the less good news to me that I’ve now got to have another procedure via my Jap’s eye to view the stent in place and the inflammation in the ureter as they will be able to see where the ureter enters the bladder so can get a biopsy from the ureter. Super.

Subsequently in the recovery bay  I was sharing it with a hardcore heroin addict and his alcoholic drug addict mate plus an elderly gentleman. They were full on discussing how it’s all their right, what they are owed etc etc. then both popped out for fag break with the druggie boasting about how he’d ‘got no veins’ left. There followed effing about and arguing over how to plug their phone chargers in, how the nurses disrespected them, how they would get their solicitors to complain to the hospital and get people sacked.

At one point Lisa was restraining me from stepping in as they had yet another go at the nurses which was the right thing to do as it would cause more trouble. It properly fucks me off at the same time as being such a sad waste. At the end of the day, what caused these drop outs to get where they are – for all we know they could be ex-forces, or it’s the result of a false accusation, or a relationship break up etc.

Anyway we got home and overnight turned out to be not so bad. First few wees from 9pm were horrendous with the full symphony of razor blades, broken glass, lightening, blood and clots so extremely painful.

As I was still a bit dehydrated I was getting an hour between each one and by 3am I had very little pain, lot less blood and no clots.

The following morning my bladder ached, the entry point in my back was sore and my abdomen felt tender and after 2 days of pretty much nil by mouth I was very dehydrated so the trains and a good few carriages got stuck in the station. Proper constipation is a horrible thing as I’ve discovered before and it was very uncomfortable and when I got the first train underway it was splittingly painful!!

The procedures were on the Monday and Tuesday and was then due in the hospital again on the Wednesday for my regular IMg drip but simply could not face it.

As it turned out I was glad I bailed out of it as when I did go on the Friday the poor stand in nurse took two attempts to get the needle in to draw blood off for tests and a joyful five attempts to get the canula in for the upcoming drip – a bad week for needles, pain and stress.

On top of that I re-started my iron chelation treatment so sticking a needle in my tummy five nights a week was not something I was looking forward to again yet it definitely seems to have some effect on my bladder frequency. So as I summon up the will to stick the needle in it helps to remember that it will give me up to an hour between each wee and that can add up to a lot of extra sleep especially if I remember to take pain killers early as it still hurts when the ‘on/off’ switch is used

Amusing myself

No, not what you think! Not after the above!! I found an app that transplants your face onto movie scenes. Oh what fun and the ones that worked best for me were Terminator, Top Gun and Braveheart – the latter with my silly grin made me laugh the most:

More constructively I have started altering my kayak I built two years ago and stripping out all the ‘extras’ I got carried away with. So fishing rod holders, extra hatches, dagger board, rudder and foot steer, mast and sail.

I’m adding a new deck, moving the main seat and adding a second so two people can paddle it – watch this space!

Freedom Car

One of the big upside over the last two weeks was finally buying myself a car – my ‘Freedom Car’ so I could come and go as I pleased and did not have to rely on lifts or borrowing Lisa’s car or my Mum’s car. With massive help from mates David and Ally who took me up to the garage near Leicester to view the car and then collect it – and what a car….a Ford Fiesta 1.4 with air con that when you turned that on I swear the car slowed down! But it was my car and would allow me to get out and about when I felt like it – I was so happy but unfortunately after owning it for just 12 days I was hit by another car and the damage inflicted was sufficient for my insurance company to write off the ‘Freedom Car’. FFS.

Having said that the insurance company have been amazing and within a week they had sorted everything at my end and arranged for the pay out to be made and for the car to be taken away. So that’s all sorted and now I’m looking for a replacement freedom car although that may turn into a freedom van depending on different things going on now…..

The bloody dog

One thing we have both been pleased with is the home made ‘trough’ for our tomatoes and more importantly the loads of tomatoes growing on it although we started to get puzzled when the tomatoes never seemed to fully ripen although we could see them starting to turn.

We eventually discovered why that was when we were having a morning cuppa on the patio and could see the bloody dog climbing onto the trough to eat the tomatoes – it seems that green ones don’t agree with her so much though as she sheepishly came over to us and yogged them up on the patio….nice, tomato chutney!

Garden

Been doing lots in the garden which has been such a boost for me and excited to see an actual olive on the tree, learning from my mum I have done some cuttings from our hydrangea plant so will see how those go and have also built my own ‘squirrel chair’ to put peanuts on for the squirrels we regularly get in the garden. So whilst my Dad is trying to kill them off in his garden I am trying to encourage them to an extent in our garden as they are so engaging to watch and so far have not caused any damage….

Website revamp

I’ve been turning my attention to trying to do something productive that puts some £ notes into the bank account so have been tinkering with a website and logo update along with tweaking aspects of the website to include some aspects of the last 18 months.

I had just started breaking into the four figure fees and even had an offer in place for my first five figure fee in Dubai but then ‘luke’ came along and put things on hold for a while so want to get cracking again.

The front page has been updated and there are going to be a lot of text changes to come too and the focus has moved to being directly on me as a speaker rather than the more generic ‘Atlantic Experience’. Once again I am indebted to various people for helping with this such as Helen on the logo changes, input from various people on text changes, focus and not least Adam when it come to producing a ‘showreel’ video.

I want to get it all sorted so that when my bladder is finally under control I can actually get back ‘on stage’ to deliver my talks without actually having to literally demonstrate the on board toilet facilities we had on the ocean boat!

Speaking of the ocean boat I’ll be off to visit her soon as I’ve not seen her for 18 months since Mark took her off for storage in his barn; she’ll be needing some work I suspect and not least it is time for a refresh of sponsors/supporters and charities being supported etc and that is all in the offing. New sanding discs and paint are on order!

With a handful of ergo sessions under my belt, see results below(!) I have a lot of work to do before I can make the crew for next year’s Thames Row or B2Sea….!

Love and support

I hope I’ve said it time and time again but the support that Lisa and I have received has been amazing and recently I received an amazing package from my Martin and Elaine – it was so lovely to get and included ironically a book on outwitting squirrels! As is usual it was all beautifully wrapped, beautifully written and as it came just after the hospital procedures and the freedom car it was perfectly timed.

Lastly a visit from my mate Simon which was also just brilliant as he drove up from near Bath and we had a few hours together talking ‘bloke crap’ and Lisa got back from work in time to have a well earned G & T on the patio whilst Simon and I lived on the edge with our third cup of tea!

So as is usual it is a series of ups and downs and we are trying to make the most of what we have and the time we have with a view that Year 1 is under our belt and there are just four more to go to be given the all clear.

To finish, I stumbled across these words from the late John McCain, and they properly struck a chord, they won’t be easy to live by but something to aspire to….

“So live your life that the fear of death can never enter your heart. Trouble no one about their religion; respect others in their view, and demand that they respect yours. Love your life, perfect your life, beautify all things in your life.

Seek to make your life long and its purpose in the service of your people. Prepare a noble death song for the day when you go over the great divide. Always give a word or a sign of salute when meeting or passing a friend, even a stranger, when in a lonely place.

Show respect to all people and grovel to none. When you arise in the morning give thanks for the food and the joy of living. If you see no reason for giving thanks, the fault lies only in yourself. Abuse no one and no thing, for abuse turns the wise ones to fools and robs the spirit of vision.

When it comes your time to die, be not like those whose hearts are filled with the fear of death, so that when their time comes they weep and pray for a little more time to live their lives over again in a different way.

Sing your death song and die like a hero going home.” 

John Sidney McCain III   (August 29, 1936 – August 25, 2018).

Big love and thanks to everyone!

xxx

 

 

 

 

 

 

Bladder Doc today – 2 steps backwards

FFS.

Short update this, things change so quickly.

Looks like my left kidney may have failed or is in the verge of that.

So procedure has to go ahead. That’s going in via my Gentleman’s Sausage to check the blockage of the bladder/kidney tube to find out what that is and if it’s cancerous. If they can they will insert a stent in the line to increase its capacity and allow the kidney to drain and maybe recover if it’s not too far gone. So same as last time, general anaesthetic then few weeks of pissing blood and razor blades.

Another option or what might have to be done subject to the above is a drain is inserted into the kidney through my back and stays in for 6 weeks to see if kidney recovers. Depends on platelets level I think.

I didn’t even know kidney failure was on the agenda but putting off the procedure has made that more likely – if I’d known that I’d have just got on with it.

Other kidney was at 80% so chances are that’s reduced too.

Bladder – just have to grin and bear it still.

Feels like a stumble towards the cliff edge. Bastard thing.

Looking forward…

Turning my mind to dipping my toe back into work – probably way too soon and still need bladder sorting as I’m otherwise a bit restricted on timings!

I’m seeing the bladder doc on the 14th Aug and have said I want a bag put in as it’s now over a year of no proper sleep. Now I can get out and about I’m restricted by my bladder plus the variable pain of weeing is horrible 24/7.

Anyway, I’m hoping to focus more on being productive than whining and crying and that will change the nature of my website and the blog somewhat, closer to what it was. Obviously feel free to unsubscribe if work stuff is a pain rather than health updates.

I’m looking at integrating how my ‘lessons from the Atlantic’ have directly helped me keep going through all the crap with ‘Luke’ as it’s now known.

So if you feel like getting involved with having any input on the website then please do give me your thoughts, whether you’ve actually heard me speak or if not, what might make you or your business/school/university/charity etc hire me in!

Also a thought, should it still stay ‘Ian Rowe, Atlantic Experience’ – it’s all up for grabs!!

I guess email would be best please at:

ian@atlantic-experience.co.uk

Thank you in advance!

In addition to that I’ve had a little dabble on my rowing machine, a Concept 2 Ergo (industry standard) that is so old the monitor had all but disintegrated – it was built around 1993 so not bad for a 25 year old bit of kit. Shows how great these things are, and not least the service offered by Concept 2 as a new bungee cord and PM5 monitor, calibrated to my machine, were soon bought and I had them installed.

Just a pity that my score was so rubbish but you have to start somewhere….

Might try jogging next…

Thanks everyone,

Ian

He’s done it!

Ally Satchwill has done it!

He has finished the Prudential Ride London 100 mile bike ride raising money for Anthony Nolan Trust.

Top lad, massive thanks from me and to all who have donated and you still can!
Please remember – if you don’t get a stem cell/bone marrow donor, you die.

Anthony Nolan Trust run a world wide register of donors – my first choice was from Brazil, 2nd choice from the UK and third choice from Canada. There was only one more option left I think but we didn’t get that far.

Please do donate some cash still and/or sign up as a potential donor with the Trust.

CLICK HERE

Big thanks to everyone who has already and not least to Ally for doing the ride!
X

 

Iron chelation in pics – plus last call for donors, bone marrow and money!

Very anxious as the nurse explains what’s involved

Cleaning the needle insertion point

The nurse, Paul, takes us through it all, this is the spring powered pump.

The needle was nothing like as bad as I expected!

In it goes! Smarts a bit!

I took the first one out a little bit too soon – note hair came with it! A little bit of the drug still left in the pump unit. It’s a learning process!

Swelling in my tummy from where the drug has gone in. Bit sore.

Part of the learning process – shave tummy!

It does indeed make your wee go orange!!

Next one much easier!!

So, 5 days a week of this, 2 days off and repeat. I start the treatment around 10pm and can pull the dressing off and needle out around 7am and it’s easy enough getting up with the pack to go for a wee.

I’m sure it can’t have had an effect yet….but I seem to be getting a bit longer between each wee. The treatment is to remove iron overload from my liver and maybe, just maybe, it’ll have a positive impact on my bladder…

Lastly, please remember that on Sunday my mate Ally Satchwill is going to be doing the Prudential Ride 100 for Anthony Nolan Trust, the bone marrow donor charity. He’s also signing up as a donor whilst encouraging others to do the same.

So far he has raised £850 of his target £1000 – please help him get over the line and make a donation, see below for his JustGiving page:

CLICK HERE