The somewhat odd life of a musician and fundraiser: July 2025

Thursday, July 24, 2025

There’s a hole in my belly

During everything that went on with lockdowns, furlough and cancer treatment, 2020 was a challenging year. In the January, my wife had her very last treatment for breast cancer, and I was diagnosed with bowel cancer in the March.

One of the pressures of Covid was that I went through all my treatment – radiotherapy, chemotherapy and surgery (a seven day stay in hospital) on my own. My wife could not attend my appointments, as I had with most of hers. Thanks to the amazing support of my wife, and the fantastic team at Ipswich hospital, I managed to stay quite positive through most of it. But after surgery (an ultra-low anterior resection), I had a new hole in my belly - a loop ileostomy (a kind of stoma). A routine, natural bodily process became something totally different overnight.

“It is now estimated that one in 335 people in the UK are currently living with a stoma. Individuals of all ages can have a stoma. Stoma surgery is undertaken to treat a range of illnesses including cancer, diverticulitis and Crohn’s disease or following a trauma to the abdomen.” – Colostomy UK

There are many reasons why you might have a stoma - mine was cancer. Some people can have them reversed after a while. For the first year I had really hoped I could, because the thought of 'being normal' again was something I clung to. But mine is not reversable without considerable risk. Understandably, the impact of this major physical change is not just on the body, it’s on the mind too.

For some people, the impact of having a stoma that you literally wake up with one day (after surgery) can have a negative effect on their mental health. In the online groups I belong to where we discuss all things stoma, we have a joint dark humour, but also the humility to share the challenges – from the practical to the emotional.

For example, feeling totally unlovable because you have a bag. Embarrassed to do things like go swimming or visit the beach, because you are so self-conscious. And some people react against their situation in a way that severely affects those they live with – such as not taking the care and hygiene needed when changing – almost deliberately driving away loved ones. And not untypically come issues like depression, anxiety and even PTSD. A stoma also changes how you process food, so you may have to change your diet too, which can be even more challenging if you have disordered eating.

Human physical resilience is extraordinary – ostomates (our collective noun) learn to adapt and manage and get on with life with a bag. But some people with a stoma worry about perception, myself included: what do my partner/my family think of me now? what will I say at work? what do I think of myself because I have a stoma? Although I have adapted to bag-life and my partner is amazing, for many it is a challenge. These are some quotes from our support groups:

“How can I be intimate with someone with a stoma? I’m worried it will put them off.”

“Struggling with being confronted at disabled toilets - no you don’t look disabled use the ladies!!”

“I’m worried about leaking on holiday.”

“…I told her about my stoma. That was that.”

“I look in the mirror and hate what I see”.

I have three simple bits of advice:

You are not alone! There are thousands of us with stomas – find a safe online or local community to join.
Find the charity that supports the reason for your stoma (eg Bowel Cancer UK, Chron’s & Colitis UK etc) or reach out to Colostomy UK. If your mental health is being severely affected, reach out to a mental health charity like Mental Health UK, Rethink Mental Illness or Mind. These charities understand your challenges and can help you.
Believe in yourself. Remember that your bag does not define who you are. You are still the person you have always been.

I also have a silly rhyme I use – “I’ve a hole in my belly where my gut pokes through, so I don’t use my bottom when I need to poo”. Humour is my way of coping.

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Friday, July 18, 2025

Madeira part one

We went on holiday! Two whole weeks on an island we’d never visited, with adventure waiting around every corner.

The mountains in the north

Madeira’s landscape is extraordinary—no wonder the Portuguese were so taken with it, and why it changed hands several times over the last four hundred years. Although it originally seemed uninhabitable to early explorers, the ingenuity of Portuguese engineers (sadly using slave labour) led to the construction of remarkable channels that carry water from the lush north to the dry south. These are called levadas, and they’re one of the features that make Madeira such a wonderful destination for walkers.

Levada PR 6.3

Our impression was that the north resembled New Zealand—high, tree-covered volcanic mountains draped in a persistent veil of cloud. The south, by contrast, felt more like a Mediterranean island: sunny and drier (though we were in the Atlantic ocean). The island isn’t large—about 35 miles east to west and 13 miles deep—so as long as you have a car and a head for heights, getting around is easy. Although Portuguese, Madeira is geographically closer to Africa than to mainland Europe.

The more recent engineering that impressed us was the tunnels! The old roads, which wound around mountains and clung precariously to crumbling rock faces, have been replaced by sleek tunnels that punch straight through the mountains. The new coast roads (head west from the airport, along the coast, and then north) probably has as much tarmac underground as it does above.

One thing we learned quickly was that if the weather in the north (where we were staying) wasn’t great, we could simply head south. We drove through one 3.1 km tunnel in the middle of the island, and as soon as we popped out the other side, the clouds were behind us and brilliant sunshine lit up the landscape.

The hotel was nice—though a bit Miss Havisham (she was four-star in the ’80s, a little faded now). But the staff were lovely, and the breakfast was a great fuel-up for the day’s adventuring. Our favourite places were the levadas (though we only walked one), Calheta beach, Fanal forest, and the local Brasa restaurant (which served amazing beef skewers).

The 'witch tree' Fanal forest

Like Iceland, Madeira has very little native mammal fauna. I managed to spot one of the native trocaz pigeons—no photo, sadly. The endemic sparrowhawks had a nest near our balcony, so I did get some good shots of them. The other prolific wildlife was the little lizards, with the males sporting a gorgeous green. Although most scattered when people approached, I found one sunny spot where a gang was sunbathing—and I even got to hand-feed them.

The island is also famous for its flowers, and they were out in abundance during our visit. The hills were draped in wild agapanthus, their huge white and purple heads nodding in the breeze, and the hydrangeas were enormous! Much of what we saw is best illustrated rather than described, but I’ll highlight a couple of our adventures in more detail in future posts.

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All photos (C) Carolyn Tyrrell-Sheppard