The somewhat odd life of a musician and fundraiser

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 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

Wednesday, April 23, 2025

One morning at Vauxhall

I left Vauxhall tube station, headed up the stairs to the street. The lights changed and I moved with the crowd, avoiding the stragglers, dodging and cursing the e-bikes that didn’t slow at the crossing.

It was a normal day. I had left home as usual, got the mainline train then the tube, and was heading to my office opposite the houses of Parliament. I often joke they are near enough to see, but not close enough to throw something at - the Thames lies between me in my accountant’s office and those in power.

The morning was bright with a cool wind, and the commuter morning seemed like any other. But as I crossed the road intending to head along the Embankment and cross by the pub – I didn’t. Once over the road by Bridgefoot, I turned left into the first entrance.

“Morning Bob” I said to the security guard. “Morning Miss Carter” Bob said. But – I didn’t know Bob - I’d never walked into this building before in my life! I felt like someone else had taken control of my brain and body. I went into the building, to the lift and opened my handbag. Usually packed with things like lipstick, escapee sweets in sticky wrappers, dog treats and multiple pens, today my bag was neat inside – nothing more than a very expensive lipstick (not my usual brand), a designer purse and a swipe key. I used the key to enter the lift and went to the third floor and marched straight to … my desk.

My brain was racing whilst my body operated on some kind of hostage automation. I didn’t know Bob, and I haven’t been Miss Carter for years! I have a husband, a house in Cheshunt, a garden, a dog…

I sat at the desk and opened up the laptop sat there, pressed my forefinger to a pad, keyed in the password and started to work. Miss Carter was taking over… she knew what to do, and she was brisk and efficient. I felt trapped behind the wall of this new person, but I still knew who I was, and that I should be somewhere else, looking at figures, not contact mapping across continents.

I carried on working, as if it was the most normal thing in the world. At lunchtime I headed out of the building – Bob wasn’t on duty, but I didn’t have to wave my ID card – the men with their stab vests and discreet guns seemed to know who Miss Carter was. I fleetingly wished that I did.

I had intended to head back up the Embankment to my office, to tell my boss that I’d had the strangest morning and apologise for missing half the day. But instead I crossed the road to the café and got a latte and a sandwich. I’ve not drunk coffee for years! It tasted familiar, comforting. I walked across the bridge, looking at the Thames, the coffee in my hand and the sandwich in my bag. I couldn’t fathom what was happening – I knew who I was, I was Mrs Walters, I’d married Michael twelve years ago in Spring, in my hometown of Bath. It had rained. My father and mother were there. I suddenly felt grief. My mother – who I’d seen at the weekend and had gone dog walking with – I knew she was dead. But she had died two years ago, so how could this be new grief?

Watching the barges full of the city’s waste create a turgid wash that tugged at the exposed sandy banks of the Thames, I felt heady, like someone with a glorious hangover that has just taken another drink. I took myself to a bench and ate, watching myriad folks go to and fro across the river, and I felt my sense of self evolve, conflict, challenge memory, and then resolve.

I put my sandwich wrapper in a bin and marched smartly back to the office. Bob was back, and I smiled and flicked him a short wave. “Busy day ma’am?” He asked.

“Not too bad Bob,” I replied, “not a late one today thankfully.” Inside I knew what I meant, but I also wondered what the ‘late ones’ were. I had a sense that tickled like a remembered flavour, of dark rooms, bright screens and the bustling of many people in a hushed, urgent silence.

At the end of the day I waved goodbye to colleagues at nearby desks who were definitely staying late. I headed for the tube station. A little part of me wondered about heading to King’s Cross and back to Cheshunt, but Miss Carter - me - knew that my flat in the Angel was waiting, with a bottle of Sancerre in the fridge, and a box set on the TV.

Into the hot train, squeezed between indifferent bodies, I wondered briefly about Michael, if he existed, if my house, dog, garden – even my mother – existed still. Well, they didn’t now, not for me – Miss Sarah Carter. No time for men, no time for gardens or pets. Just time for my next assignment.

At the flat I shucked off my high heeled shoes (I thought I’d come out in brogues this morning) and looked around. The flat was neat, tidy; Marcella had been in to clean. Having poured myself a glass and vaguely looked into the fridge for something other than yesterday’s cold pasta, a brief glimpse into yesterday's life peeked back at me from a tin of cold beans. I took them out, threw them in the bin.

Tomorrow was another day, another challenge, and someone called Mrs Walters drifted into memory as if she were a story recounted, not a life that simply vanished one morning on the way to work.

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Thursday, February 27, 2025

Excuse me, are you dead?

A few years ago, I applied for credit and was refused. I contacted my bank, Santander who told me I was dead. Ahem... I hadn't noticed! Very remiss of me? No, they checked I really was alive, apologised and made amends (£200), but for two weeks I was dead according to the financial world. Not dead for 'tax purposes' as the dodgy Arthur Daly once recommended.

Check out the old 1932 cartoons!

As someone who sends out those letters and emails asking for money for a good cause (not worked for a bad one yet), I am very sensitive to the hurt that can be caused to loved ones by sending letters out to people who are deceased. We take every precaution! If we are notified by a relative, or by returned post, we update the record and they are not mailed again. We even use external agencies to check for notification of death using precise matching of name and address. We really don't want to send a letter to a dead person, firstly so as not to upset the remaining family, and secondly because it is a waste of charity resources.

We recently sent out a mailing and did a 'screen' to remove those who are no longer living. The printer sent us back the records to remove as a result of the screening. Interestingly enough, five of them still had live direct debits with us. And then, one updated their address. Hmm... methinks that's pretty hard to do if you are dead!

I asked the question on a fundraising chat board and, anonymity promised, I discovered that we were not the only ones being told that our living donors were dead:

"I once had to remove the phone from one of my team who was busily letting a donor know they were dead and therefore she couldn't help them"

"We've just had a supporter restart a Direct Debit who was marked deceased by BACS last year"

"Have had a “deceased” donor on the phone asking why they didn’t get a thank you letter for a donation"

Now the first comment might make you smile, but at the heart of this is the people who have lost someone, who we don't want to mail or contact because of sensitivity to the family. Sometimes a direct debit may continue even with a deceased notification because it's a joint account, and the remaining individual wants to continue supporting the charity. But it goes to show, you can be as careful as you like, but it can be a very hard one to negotiate and make totally pain free.

In closing, I would just like to apologise to every family who has received mail to a dearly departed, charities really do try their best!

Useful links (possibly!)

The Bereavement Register (public can ask to stop mailings to deceased)
Mortascreen (a business service that checks death records and other sources for deceased notifications)
Experian Mortality (description from Data8)
Death Notification Service (does what it says)
General Register Office (UK Govt. 'hatch, match and dispatch')
Arthur Daly - Minder (British TV comedy)

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Picture source: not sure, but it's from an old Silly Symphonies animation.

Monday, February 24, 2025

Iceland part two

In November 2024 the volcano south of the airport decided to flex its magma and attempt to wipe out a town, destroy a few roads and seriously threaten the Blue Lagoon and the nearest power plant. It was spectacular! Not world-impacting like the 2010 eruption of E17 (which is on the glacier we later visited) - but still impressive. Would we see lava? Well, not 'in the flesh' as it were. The volcano was rumbly, but not performing for visitors when we were in Iceland.

Human made lava

Day two: doing the cultural bit. We had our breakfast and headed into Reykjavik, having decided that the Lava show and Northern Lights exhibition were the two places we wanted to head to. Deciding on the Norther Lights first (we hadn't seen them yet, as it was so cloudy), we rocked up to find it shut! And a sign on the door saying they'd moved - phew! We headed to the new venue but arrived at the Lava show venue first, with just 10 minutes before the 12 o'clock show. Lava first!

When a couple watched the lava flow past their house, they were awestruck. They wanted us all to share in the wonder, but without the evacuations, ruined roads and danger to life. So they built this show with a massive burner that melts the black laval sands and turns them back into hot lava. It was mesmerising! The presenter, Joanna, gave a really interesting talk on the geology of Iceland, how the lava is released, types of lava flow (using two cute but forgotten Hawaiian terms), and then demonstrated how it would buckle, turn into glass, and retain heat even when the surface was cold. She made lava strands (witches hair) and - as the lava had already been melted once and was 'gas free' - the result was like black glass.

Northern lights watching

After a very enjoyable 'demonstration' we went next door to the Northern Lights exhibition. You might wonder how they can showcase a natural phenomenon, but they did a great job. There were really clear explanations of what causes them, where they happen, the different colours (different heights in the atmosphere) and an amazing photography display in an almost cinema-sized room where you could sit, or even lie down and watch the Northern lights in all their glory. If we didn't see them in real life, this would be the next best thing! The tour finished with steel swivel pod chairs and a VR headset that worked amazingly. We got our Northern Lights fix!

Driving out of Reykjavik we headed to the Harper Hall (an amazing building) but as we could not park anywhere, we headed out by following the coast road. It didn't take long to reach a lighthouse and a nature reserve. We could have walked to the lighthouse along a little causeway, but the tide was coming in and we didn't fancy an afternoon being buffeted on the lighthouse island, waiting for the tide to go out again. Instead we started to walk along the sea wall (looking down on black sand) and we saw our first proper wildlife: King Eider ducks, purple sandpiper (a first for me) and a speeding hawk that must have ben a gyr falcon, although it was too speedy for a confirmed ID. We had a lovely walk through the nature reserve up to a large pond with Whooper swans, pink footed geese and a host of other ducks. The wind was whistling round us, and it was overcast, but the fresh cold air was exhilarating.

On our way back we stopped for a late lunch at a small restaurant and we had raw beef and cooked cheese. I say 'we', but I ate most of it.

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All photos (C) Carolyn Sheppard

Tuesday, February 18, 2025

Iceland part 1

Oh, I've been a lax blogger! But Sheena and I have been busy, for sure. Our latest adventure was a trip to Iceland in February.

Day one: we had stayed overnight near the airport as the flight was at silly o'clock. All went smoothly and we landed in Iceland at just after 9am local time (which was the same as UK time). It was cold, but not snowy as I had imagined. There was old snow on the ground, muddied and slushed, but the vista was of rocky, snow-highlighted terrain rather than the white-out I had anticipated. Warmer than usual for the time of year perhaps? But it was chilly, and the wind was biting!

Stripy Icelandic Mountains

We eventually found our hotel after asking directions (sent to the wrong place, with same road name), and using an insufficiently detailed map until at last our sat nav started to work. On the way up the main road from Keflavik to Reykjavik we passed the biggest fish processing plant I've ever seen - it must have been about a kilometre long! But then fishing is a mainstay of their economy, so not surprising.

As soon as I walked in I realised it was the same hotel that I had stayed in during my previous visit 8 or so years previously, even though I hadn't made the booking this time. Picture hunting lodge (entrance) crossed with motel style parking and rooms, and a sports bar with video screen (showing flickering firelight most of the time). The ground was icy - and there were dirty piles of snow in the corners of the parking area. Across the road we had a lovely view of the KFC (no, we didn't eat there once). Our room upstairs looked out across the town (Mosfellsbaer) to mountains that were striped with snow that snuggled away from the wind in the channels made from years of meltwater scoured paths. It was picturesque, but somewhat bleak without the mantle of complete snow cover. It was a nice room, a very comfy bed, and pleasant staff. The breakfast was a help-yourself buffet which enabled us to fill up heartily for the day ahead.

We spent our first day relaxing and went to the local supermarket to stock up on some sandwich

Our hats kept us warm and made others smile!

components. We visited the bar in the evening and chatted with some other residents in the lounge, plus an Icelandic storyteller. Now, he probably didn't picture himself as a storyteller, but we all recognised him as such. He started off as a fisherman, working out of Dubai. He had an apartment in Dubai. He was the son of the family who owned the massive fish processing factory. His father was dead, his mother was an alcoholic. He inherited the family business and was a fisherman. I have never seen a fisherman with such soft, small hands! But who knows, maybe he was the sonar operator or something. He had an apartment in Iceland, no, an apartment and a house, or was it now two houses? He was upset that girls he met wouldn't wait for him for three months every time he went to sea. He loved being at sea, even though as a millionaire he didn't need to work. He also loved to talk, but seemed to be following in his mother's footsteps. Our host came in and spoke something rapid and harsh in Icelandic. He sloped back to the main bar, like a contrite child.

It was good to exchange pleasantries with the other guests, and share what we had done or what we were going to do. Our first day was relaxing and we slept well after our very early start. No Northern lights out the window, but rain!

In part two - LAVA!

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All Photos (C) Carolyn Tyrrell-Sheppard

Monday, December 02, 2024

Reflections

I look at my blog sometimes because there's something there I'd like to refer to, such as a cancer story, or something to do with work, or just because I'm prompted by a memory. My blog is really my public online diary. But that's OK, I know very few people read it, but it will be here for my family in the future, and for anyone who is casually browsing and finds one of my stories or posts on one subject or another.

I was looking through my cancer posts as there was news in the Telegraph that smear tests may be less invasive in future. Oddly enough, I had my latest test recently, because I had some HPV cells in my last one so instead of falling off the test list, I'm staying on for a while. Thankfully, all clear this time.

I wanted to share with colleagues how important it is to attend these tests, as uncomfortable as they may be. They really could mean the difference between life and death, or life and a more invasive treatment regime that would make the smear test pale into insignificance. By invasive I mean things like surgery, chemotherapy, radiotherapy. Catch it early, and you are likely to have a better cancer journey than many.

My cousin's cancer is back, but he is very stoic and - whilst having treatment - is fundraising for CRUK. He is confident that it will be kept under control - and he kept up his tests, so it was spotted early. I have had another colonoscopy because I had some abdominal pains, but they were clear. Yes, the colonoscopy was definitely 'not fun', and the results were negative, but I'm glad I went through it instead of leaving it to chance, and also letting the thought - and that can be almost as destructive as disease - continue to nag at me.

The old mine, Adelong (C)

Are you worried? Do you have something that doesn't feel right? Get it checked! Don't worry about your GP's time, that's what they are there for (and they'd rather treat you sooner too if there is any need). Are you worried it might be something, or nothing? Well something is a hell of a lot more worrying than nothing, so go get that check, and eliminate the uncertainty. You and your family will benefit from positive action, I promise.

But back to reflections, as well as looking back on my cancer journey (and Sheena's), I also read one of my posts about my visit to Malaysia and Borneo - and that's a memory I treasure. I wish I could go back and visit Baku forest again and see the proboscis monkeys, or cross the river in Kuching to taste one of those impossibly bright cakes they sell, or see a langur in the wild again. But, I did those things - how lucky am I?

Look after you, as well as those around you. Follow up on those tests, anything that doesn't feel right. Check it out.

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