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!
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
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!
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!
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….
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!