Highs, Lows and technology

I’ve a had a couple of weeks off because I’ve had a bug and that’s made me a bit low in mind as well as in body.

I’m not very good at being clinically vulnerable. There I’ve said it, so I think nothing of going to an 80s punk festival in Blackpool, I mean it’s outside what can go wrong. Well when men, and it’s usually men, of a certain age get together and see the likes of the undertones, Tom Robinson, buzzcocks and Billy Bragg together (of which more later), we all think we are 27 again. There is a lot of singing (that’s a lot of germ spread) swaying, stomping and dancing

So guess what, I got a bug! That’s right I’m as surprised as you. Nothing too serious, but I got a very strict telling off from Jen about trying to work through it as I eventually ended up in bed. When you’ve been diagnosed, had a ton of treatment and a series of stable scans then you can be lulled into a a feeling of normality. I haven’t always got a mask in my pocket any longer and this bug has wiped me out and I’m still recovering. I haven’t been able to do my cycle challenge for brain tumour research every day but hopefully I’ll be back to complete London to Brighton in September.

So I like to think I’m not too bad with tech but one thing completely defeated me this month, a disabled persons railcard. This shouldn’t be too difficult for some of the most vulnerable in society surely I was thinking as I walked into Macclesfield station….what the hell was I thinking? “No you have to do that online love” was the answer. Well I have part of my brain missing and sadly it’s the bit that deals with this kind of thing, it’s actually my disability. “Sorry love all outsourced”, oh “but you look well”. I didn’t scream as still have a small degree of decorum. So between Jen and I we tried. The site was broken I was asked to ring, they then asked me to go back and email the people who had told me to ring. Now I appreciate for most of you this is just normal frustrating life. But for me, under the weather with a bug, it’s proof that my brain function is worsening which must mean my tumour has, as we know it will, kick back into work. Ok, now I’m catastrophising, but with a terminal brain tumour when you’re a bit low and under the weather, it’s easily done. It happens, but what I have is a beautiful supportive and grieving partner who now has this distraught man thinking his brain is failing. Sometimes it takes someone to say. Look at the evidence before you got the bug you were out on your bike and walking the dog, these are not the actions of a man at end of life. Also these things are made to be difficult to do. So I’ve come through it and I no longer think I’m about to say goodbye. Down to the strength of family and our online community support

So let’s finish on something positive.

I met up with Dad and Dom in Stafford and we had a lovely evening and walk on the chase a bit of food and chat

Mum and Dads (sadly missing Mum) they don’t make social housing like that anymore

Now whist I’m not saying that’s not positive enough a great day out with your Dad and Bro

At the aforementioned gig half way through Billy Bragg’s set. Billy stopped and said is my mate Liam here? When I put my hand up one of the promoters came over and said Billy would like to get you a beer after. Billy then spoke about how many services cancer has been underfunded recently. I was inundated with well wishers and people showing me their scars and telling their stories. I first saw Billy Bragg in maybe 1987. But he followed me when I had a free ticket years ago and used his thread to find it a home. He’s been unbelievably supportive. They say never meet your hero’s. Well not if it’s Billy Bragg, we talked like old mates catching up over a beer and a custard cream or two. Brilliant stuff