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24th September 2018.

September 25, 2018

Wow. As we say in Cowley, “By ‘eck. Thee don’t do things by ‘ arf”

I set my alarm for 6am but found myself awake by 5.30 anyway. It was Rightful Lives launch day. The exhibition encouraging visitors to reflect on the relationship between human rights and people with autism and/or learning disabilities. The exhibition has been five months in the making and the sheer creativity of the project and the contributions has been an absolute joy.

As I watched the reactions unfold, I realised I’d become almost blase. I’ve looked at every exhibit daily for several weeks and have moved from awe to comfy familiarity. Reading the feedback brought me back to the emotional impact every single one of the exhibits carries. For me, on many levels. Each exhibit is so deeply personal it moves me profoundly. I love the ordinariness as much as I love the extraordinary. To see an exhibit from a young guy with learning disabilities sitting alongside the contribution of a social worker is powerfully touching. The meeting of history with the now brings us together in a way that I’ve never experienced before. Bottom line: it’s been a stonking experience.

It’s been awesome working with Julie and Mark on the project. I’ve always been slightly envious of those close working relationships like Starsky & Hutch, Morse & Lewis, Cagney & Lacey. I feel I’ve now had that experience having worked with those two stars. We’ve laughed like drains regularly, we’ve cried and we’ve raged. Good buddies.

At 8am I had to drag myself away from the computer for my appointment with the urology consultant at the hospital. All the symptoms I presented to my GP nine weeks ago have disappeared and the CT scan found my liver clear and no sign of gall stones. However…

I’ve got a tumour in my bladder. It’s a “sizeable” tumour. They don’t know yet whether it’s malignant or benign. But fortunately the scan revealed that it hasn’t spread anywhere else. It’s location is contained and is in the dome of my bladder which the consultant described as the best place to have a tumour as it allows him easiest access come surgery.

This is the plan and I’m still bewildered by it. I go in to hospital on Friday and whilst under a general anaesthetic, the surgeon will stick a camera up my manhood to determine the state of the tumour; remove it; apply a single dose (?) of chemotherapy if the mass is malignant, and finally he’ll fit a 24 hour catheter. As long as there are no problems with the surgery and as long as I can pee properly once the catheter is removed, I’ll be discharged within 48 hours. A few days bed/sofa rest at home. And a check up after 3 months to make sure everything is okay. That’s it. Is it possible to deal with cancer quicker than it takes to shake off the common cold? I checked, double checked, triple checked that I’d heard correctly and I had. And when I got home I checked with Dr Google and what I read was a carbon copy of the consultant’s words. I guess I’ve been lucky. It’s pure coincidence that I had the CT scan for one set of symptoms that passed naturally but the scan revealed something for which I’ve had no symptoms at all.

I was back home by lunchtime and spent the rest of the day swinging between basking in the warmth of the exhibition response and blubbering on the phone as I told friends my news. I don’t feel upset any more. I don’t feel scared. I feel a sense of relief. I’ve imagined and rehearsed for the past 9 weeks being given the news that I’ve only got a short time to live so I feel I’ve got off lightly. Writing that feels bonkers – how can having a tumour mean getting off lightly! But that’s how I feel and my therapist’s specialist subject is denial so we’ll cross that bridge if we come to it.

I slid into bed just before midnight. In amongst all the love, humour, collectivity of the exhibition visitors, I saw a tweet from my anti fan. Needless to say I came in for a pasting. I cried. But it wasn’t because of her. She was just the straw that broke the stressed camel’s back. I was asleep within minutes.

And for the first time in about two years, and on the day I discovered I’ve got a bladder tumour, I didn’t need to get up during the night for a piss.

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3 Comments
  1. I am so appreciative of what you have done in reflecting and highlighting to us all to the faults in the system, in processes, in jargon, in ridiculous procedures, in the hypocrisies and showing the real good practice in simple, practical examples. I try to bear all this in mind, but fear I will be drawn into “acceptable unacceptables”…I have spent 25 years resisting this eroding of human rights and am finding it harder and harder, but don’t read this as capitulation!. As a charity we provide services that otherwise wouldn’t be there, fighting for the rights of people with profound and multiple disabilities. It’s just so hard when decision makers won’t listen…but I don’t need to tell you that. Thank you for inspiring me to keep going.

  2. trabasack permalink

    This is fantastic news, so pleased it is all working out ok.

  3. kate permalink

    Tumour sounds scary but what a relief to get some answers at last. Let’s hope it is removed easily. Let’s hope it is benign and, if not, still treated very easily without side effect. Guess you’ll be banned from lifting any weights for a while. Please keep us posted. I’ve now got to try to fathom how to access Rightful Lives when I don’t even understand twitter or facebook..

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