A load of rubbish and one special day

In 2019, 1.5 million people died from diarrhoea.  This week, I gained a real insight into why this is the case.

Like all sorts of chemo side effects, this one was predicted and I took a load of Imodium home.  I didn’t need it when I went out on Wednesday afternoon.  But by the evening when I got home to take some, I’d lost a looooot of fluid.  Having a stoma makes this unpleasant affliction a bit more bearable than conventionally.  It also makes it easier to just carry on and not compelled to shovel the relevant drugs down as quickly as possible.  So with the benefit of hindsight, I could have taken action more evasively.  Wednesday was difficult but I still felt ok.

But by Thursday, dehydration had weakened me to the point I didn’t go outside, save for a brass band rehearsal that I couldn’t exactly fail to attend, what with a concert looming.  The stoma probably helped here.  With a normal digestive system, I’d have spent the entire day in the bathroom.  And I felt my foot tingling a bit too…

Yep – to top it all off, a recurrence of the acute gout that crystallises around my right big toe every few years.  Thankfully, I had a call with my consultant, so was able to sort a prescription – after being told off for not managing the diarrhoea better.  I spent most of the day walking around in pain between hospitals, but broke up the walking by paying an ‘idiot tax’s of £17 for a round trip from hospital to home and back to collect the blood test form I’d forgotten to bring.

With the benefit of yet more hindsight, a big curry with friends on Friday night probably wasn’t a good idea.  Heartburn was just the start of it.  But I was pounding the Imodium by this point, which made me really anxious  and prone to not sleeping.  I woke on Saturday morning utterly depleted – the way I’d expect to feel after a very long run.  There was no chance of making it back to music school and I just went to bed and slept most of the day.  I haven’t had many days like this but it took everything I had just to keep myself eating and drinking.  I called Jude the nurse to check that the nhs wouldn’t do much with me at a weekend and just had as many salt tablets as could. At least the gout was easing off…

I didn’t really notice any gout pain this morning (Sunday) but a new kind of stomach pain started presenting itself… surely not?  No! Don’t be ridiculous!  This felt just like when I’d had all the bowel obstructions and constipation.  But I was able to function ok in the afternoon and that’s useful because I had a gig this afternoon.

Not just any gig – Pavilion Brass Band’s charity concert for Macmillan Cancer Support.  I’d spent months preparing the band and was looking forward to ripping into trombone solo.  Plus there was going to be lots of cake as this was for Macmillan.  Well I’ve been through all sorts with that kind of pain so off to Romford I went to put on my best smile and put on a show for the 200 odd supporters who turned up.

Forget ‘this too shall pass’ mentality.  If there’s a show that music go on, I’m there.  And here I was gritting my teeth hoping for the opposite of what I’d spent the past few days wishing – that my colostomy bag would fill up and give me some relief.  It did a tiny bit but I didn’t go for much cake in the end at half time.  The concert itself was everything I’d hoped it would be.  A large and attentive audience, a band that was making a pretty polished sound, a trombone solo that no one booed.  In between the pieces, there were a few speeches including a word from Paul the Macmillan representative, Peter the band chairman and me first doing the public health spiel and then the ‘emotional’ speech.

I knew approximately what this would sound like.  I wanted to thank everyone for coming.  Amongst the audience were people who I’d known from 38 years to 38 minutes and everything in between.  It included my old primary school teacher Georgina and my predecessor/boss/unofficial mentor Jo.  My best friend Ollie was there as was Esther who’d travelled all the way from Suffolk.  Long lost friend Susie made an appearance as did so many musician friends.

But in my situation this show of support signified more than this.  I live alone.  There’s no one by my side.  This chemo life is a pretty solitary existence.  But today’s concert showed me that I’m far from alone.  That so many people from family to complete strangers are on my side.  It’s overwhelming, especially when a hall full of people give you a standing ovation.  I’m anything but alone.  No matter how bad it gets, so many people want to see me succeed, whatever form that takes on any given day.  I kind of knew it all along, but today I felt the weight of love in that room.  Not pity – anything but that!  But genuine compassion. After I’d just about managed to get these words out, we expressed these emotions through music with the most beautiful rendition of You’ll Never Walk Alone. Give me the most perfect set of professional musicians available and I’d turn them away because in that moment, Pavilion Brass played with heart, soul and quivering lips. I couldn’t be prouder of my little brass band. They gave more today than I’d ever expect of them.

Of course anyone in my position wishes they’ve never had cancer and could reasonably expect to live to old age.  But would I erase the past year and a bit?  I’m not so sure.  It’s been terrible and wonderful in equal measure.  It’s a gift to be told how much people care for you. People might spend decades, maybe entire lifetimes without feeling the love I felt today.

As I offer my arm for another load of chemo tomorrow,  I will be armed with the love of an entire community.  Of course it’s going to be tough.  This symptom management is a full time job!  But it’s days like this that are going to see me through.