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.
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:
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.