It’s been a struggle to motivate myself to do any sort of an update as things have as usual been up and down!

Bladder and waterworks being the main cause as I’m now into my 10th month of peeing somewhere between every 20 and 40 minutes depending on how hydrated I keep myself.

At times I’ve deliberately ‘dried’ myself out so I might even get 60+ minutes during the night. The downside of that has been constipation – something I’ve never really had before. That has been unpleasant with the ‘trains’ being very, very difficult to ‘get out of the station’ and there being a lot of trains backed up in the ‘sidings’. Painful and uncomfortable so back onto drinking 3 + litres of water a day which has resulted in normal train service but back to peeing every 20 – 30 mins.

Dehydrated Vs hydrated or IPA to the left and white wine to the right?!

I’d seen the bladder Doc again and after more scans they’ve seen restrictions in the kidney to bladder pipe on my left side. This means my left kidney is operating at only 20% and they are going to have to take a biopsy of the restrictions to make sure they’re not cancerous. Guess how they will do that?!

So can’t wait for that to happen, it’ll be under general anaesthetic again as it will be a large instrument going up my Gentleman’s Pepperami – deep joy, that’ll be razor blades, blood and lightening to look forward to again!!!

On other things my liver is still all over the place with my iron overload from all the blood transfusions still being very high. The start of ‘Iron Chelation’ treatment is imminent which is where I insert a needle in my tummy fat (not much of that) and have a battery operated pump administer whatever drug it is over 5 hours.

I will have a new pack each day for 5 days, couple of days off then another 5 day cycle. Keep that up until my iron level reduces.

There are big upsides from that, clearly less strain on my liver, also my heart and eyesight – my ‘Man Plums’ won’t shrink and my hair growth should go back to normal. Muscle aches and joint pain should be alleviated too.

Oh, and apparently I will feel less fatigued – not sure how I’ll judge that with the lack of sleep from peeing. You never know – maybe it’ll help my bladder recover too. Being Iron Man is not what I thought it’d be!!

My headspace has been very variable – there are times when I feel the giant dark wave is towering over me and my tiny little pilot light burning at the foot of the wave is about to be extinguished. Sometimes I’ve hoped it will be and I can slip away quietly and painlessly. That’s when the little voice in my head shouts ‘F#CK OFF – we’re just not doing that!!’ and reluctantly I ‘get back on the oars’ to take another weedy, crappy technique rowing stroke and move the boat a tiny, tiny fraction. It’s annoying at times but I’m so grateful I did when the sun comes out – and that could be having a cuppa on the patio with Lisa, a daft thing our youngest Lily has done or a message from one of the other kids, or a friend or a visit from a mate.

It might even be remembering Italy are not in the World Cup and now neither are Germany nor Argentina! With England through to the last 16 that’s a succession World Cup already, just a shame that the Scots didn’t get in through to it at all…!! 😉

Sport has been great though, England finally won a rugby union test again, the rugby league team beat the Kiwis, we smashed Australia in the cricket, the women’s cricket has been brilliant, Formula 1 has been great and on Wednesday I will start my YouTube marathon watch of Henley Royal Regatta but not from a Hospital bed like last year!

Other good news has been the ongoing successful reduction of my anti-rejection drugs. I had been taking 2 pills, three times a day and have been dropping a pill every two weeks. This coming Friday I drop another one and will be on only one a day. I’ve got tears in my eyes as I write this bit as this is a big step forward and we have less than 2 months to go until ‘Jonny Canada’s’ first birthday on 31 August. That’s a year since my Canadian bone marrow transplant.

One thing I have really struggled with in my headspace is daring to look forward in case I ‘tempt fate’ and it has been very difficult to do this.

A big thank you goes to my mate Tony who’d popped over and we talked about this – apart from the normal manly things we usually talk about. I’d said to Tony that I was living in fear in case the wheels came off and I went down the plug hole. He pointed out that if they did come off and I looked back would I rather see that I’d dared to dream and cracked on accordingly or look back and see I’d lived in fear and not done very much. Seems such a small thing at the same time as being massive but I’m cracking on now much more than moping about – I think my beautiful Lisa sees that too and I’m hoping it helps her deal with me and the situation too. She has more than enough on her plate without a passenger!

So things I’m getting done add up to quite a list for me in my current lightweight, no strength, no stamina condition:

New trellis on parts of the garden fence – creosoting and then screwing in place around 60feet of trellis made me realise that I have no strength nor stamina in my arms and shoulders and I still need to better quantify what ‘overdoing it’ is. First day I did 12 feet and then had two days recovering! Getting stronger though.

Digging out and potting herbs for Lisa’s herb garden plus putting some new ones in with a special feature of oregano in the right and thyme in the left for her old Hunter wellies. So wished I’d double checked they were the old ones especially once I’d gone online to buy the replacement new ones!!! How much?! They’re wellies FFS!!!

Moving around 500kgs of cement bags and ornamental stones from the front of the house to the garage and then to various parts of the garden was definitely overdoing it even at 100kgs divided in 5 bags at a time over a number of different days!! Resulted in a number of follow up days in ‘zombie’ mode of not being able to do much and hurting a lot but worth it for new border to herb garden and decorative stones on some beds.

Finishing off the water feature; the top surrounding tiles, underwater lights, central fountain, ‘blade’ waterfall at the far end and newly potted grass and plant to compliment it all. Quite chuffed with the aluminium plate cover and handles that I made to cover the compartment with the various pumps and electrics in. This is so lovely sitting next to…..watching other people enjoy a G & T or a glass of wine over the top of my fizzy water!!! 😡

What has been a laugh, for me, is ‘planting’ my completed Xmas and birthday present Airfix planes around the garden and I’m certain Lisa enjoys them as much as me!! This is no doubt especially so when I explain what type they are, the sort of weapons payload they carried, type of engines, number of crew, service ceiling, how many built, numbers of variants etc etc. She must be so exhausted bless her as she often seems to fall asleep…..

Last few things:

Newly repainted garden furniture…

Carefully pruned (it’s butchered!) wisteria…

Enjoying the cooling (!!) shade under the gazebo next to the bubbling water feature.

Trying to decide what to cook on my brilliant Father’s Day mini bbq present….!

Fishing, trying to do normal things, only caught this fish with my tiny maggot though:😉

Bit inadequate next to my mate’s previous catch, god knows what bait he used:

Plenty of these in there – when we get the Licence through we’ll use our crayfish trap to catch lunch – once today’s pollution spill gets the all clear….

Lastly a new boat project – sanding, scraping, sanding – I love it!

So overall doing well but please remember that cliff edge is right there next to me and there is a long way to go. Lisa often gets messages saying something like how great it is to hear I’m better – we have four years on the cliff before that. I am though working on getting better at looking ‘inland’ rather than over the edge.

Big thanks to Lisa, kids, family and friends who continue to be there for us.

Ian

xx

 

Category:
Ian's Blog

Join the conversation! 28 Comments

  1. If ever there was true grit, you have it Ian, whether you realise it or not. You’re still fighting on despite some of the stronger waves.
    Your courage is extraordinary, and your talent to make such awfully hard challenges into the blogs is unreal…there’s love and laughter when I read your updates.
    Tony is so right..looking forward…you don’t want to be in the ‘if only’ Camp!..not really you is it 🙂
    Keep on those oars..big hugs to you, Lisa and the kids…you can win this race..lots of love to you all xxx

    Reply
  2. Keep going Ian! You are doing amazingly and should be proud about what you’ve achieved xxx

    Reply
  3. A great update as ever Ian; candid, heartfelt and witty. You seem to be achieving masses in your garden and I love the Airfix models popping up everywhere. Keep fighting my friend x

    Reply
  4. It’s wonderful to hear that even through all your pain and discomfort you are managing to potter around the garden and trying to get some normality back. Remember Ian, even on your darkest days there is light .
    Love to you all, Keep the faith, stay strong!

    Lisa

    Reply
  5. Ian ,
    Your heartfelt summaries are truly inspiring and your ability to add such humour in the face of adversity is to be admired.

    If anyone can do this Ian it’s you!

    I hardly know you, I only met you once at Eaton Dorney when you spoke to our Young Enterprise students, but I can only wish you the very best for a recovery that brings you and your family to a far better place than ever before.

    Keep writing and keep focusing on what truly matters you and yours.

    Many many best wishes and prayers for you.

    Cheryl D’Cruz – Past Young Enterprise Board Member.

    Reply
    • Hi Cheryl – bless you, thank you. I’ve still got the video of that Eton Dorney talk somewhere!

      I’m staying ‘on target’ – tough most of the time but the prize is everything. X

      Reply
  6. Thanks for sharing the journey Ian in such detail I can almost feel I was there.Your spirit is amazing. Keep on rowing!

    Reply
    • Cheers Big Fella – I can pretty much guarantee you didn’t want to be there when ‘the train left the station’. I had to take a pic of that too to show the Doc, let me know if you want me to ping it over….!

      Reply
  7. Big man hug mate. You keep doing what you do best and showing the rest of us whiners up every day. I’m such a dick sometimes with my petty rants – your updates at least selfishly help me to appreciate the good things in life and stop bitching about the irrelevant x

    Reply
    • Cheers mate – believe me, it doesn’t stop me having petty rants, I might actually be worse and then play the ‘I’m poorly’ card or the ‘It’s the drugs’ card depending on the depths of petty I’ve sunk too!

      Reply
  8. Your updates have it all: metaphors galore to cover up the gore, banter and laughter mixed with potential disaster. Endless endurance and an iron man performance. Cups of piss, plums you could miss – but nothing rhymes with Total Legend.

    Reply
  9. So grateful for your insights and updates.

    Hearing your experiences of some of the more treacherous seas of the human condition is both terrifying and reassuring. Your mate with the really, really cool name has a good point, just keep going, make each day count in the best way you can, and take comfort in the fact you make a difference and people care.

    You’ve got some rubbish cards at the moment just play them as best you can, your next hand might have a few more picture cards ♦️

    Reply
  10. Amazing update. Keep going for your wonderful family and enjoy Henley.
    The Old School seeded in the PE, with you to back them can’t lose!

    Reply
    • Thank you Anthony, went for a pre-HRR visit to Henley today for a low key catch up with some old mates. Saw Pete Mulk – the school will progress but there’s some proper heavies in there beyond our reach still. Mulk is def getting the Boat Club ‘professional’ from top to bottom at long last! Won’t be long….!!

      Reply
  11. Good to see you back online Ian. You truly are an inspiration to so many people. We never know what life has in store for us but your story just shows how inner strength can produce remarkable things. Glad to see you are still fighting those high waves 🌊 Sounds as though that beautiful family of your gives you the motivation to fight on. I look forward to the day when we can catch up in person so I can give you a big hug 🤗

    Reply
    • Jo that’s lovely, thank you. A hug will be lovely too, much better than the one I’m sure Tony offered me!!

      Reply
  12. So glad to see you back on your blog. We can never say that we enjoy it but you keep us on track and help us all to appreciate what we have…as you say just sitting having a cuppa with Lisa or your daughter chattering away about her day is the greatest tonic.
    Your garden looks amazing and it made me tired just reading about the work you’ve achieved…something you couldn’t have done last Summer. Enjoy the warmth of both the weather and the good wishes which come your way, both in abundance.

    Reply
  13. Ian, I have only just discovered your blog. Reading it is like doing ten rounds with Mike Tyson. I am exhausted and battered and emotional. Well done to you both on getting through so much together.

    I am left wondering whether writing this blog helps your coping mechanism, or whether it is just an excuse to discuss the workings of your gentleman’s appendage in public. Either way, it puts my third world troubles into perspective.

    Stay well.

    Reply
    • Ah ha! You’ve seen through me! Had a day out today so much happier about getting out if it’s low key and not too busy. I’ll drop you a message.

      Reply
  14. The thing with standing on a cliff is you get a great view. I agree being on the edge of cliff though, you can either shit yourself or be exhilarated!! We did say about catching up for a drink, but based on your IPA or white wine,I’m not too sure how enjoyable that would be- maybe ill just have fizzy water as well. Fancy doing my garden, you have really shamed me.

    Reply
    • I’m def on for a catch up – especially after my ‘Ian’s Day Out’ today. Drop you a note. I’ll work on enjoying the view, I like that despite my fear of heights!

      Reply
  15. Now then Fella – what a year !
    You have achieved more than any of us in a lifetime .
    As for the cliff , well there will be many ropes and ladders to cling onto – all WE have to do is haul you in . Easy task as your such a light weight at the mo!!
    Much love to you and Lisa . Big hugs too .
    Kate xx

    Reply
  16. So, great. I ping Lisa, ask after you, haven’t heard from you in a while, hope all’s ok, love to see a post etc. etc. hugs and love etc..etc…

    How am I paid back for this concern? You post pictures of your lovely garden! Brilliant! Then to make it worse, Liz asks about it and you reply back that its only what she deserves!!

    Here is me, putting up years and years of resistance, excuses and diversions to avoid building that sodding pergola then sick-boy mate comes along – “ooo, look at what I’ve been up to … you should get Mark to do yours….you deserrrrvvve it…”. Thanks mate.

    (btw, fab to hear from you, still hugs and love from this far away and all the best for every day 🙂 🙂 )

    Mark.

    Reply
    • Haha!! Oops! You’ll love doing it all and can at least have a cold beer or two rather than a glass of water…does that help?! X

      Reply
  17. Aw so lovely to see that cheeky grin!! 😊 a very big well done for all you’ve achieved Ian, you’re true grit just like you were when training on the rowing machine in the basement of the office for your Atlantic crossing, happy memories!!! No more talk of cliff jumping in any case your lovely Lisa and family would be there at the bottom to catch you. Much love to you Lisa and family as always xxx

    Reply

Leave a Reply

This site uses Akismet to reduce spam. Learn how your comment data is processed.

 
 
%d bloggers like this: