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In this newsletter: They Say Lightning Never Strikes Twice…(words from our Ambassador), Grants Awarded, Fundraising Events....

Oct 01, 2025

They Say Lightning Never Strikes Twice….

They say lightning never strikes twice. No one could be unlucky enough to be diagnosed with a life-limiting lung condition and then incurable cancer, could they?

If we were in the pub, this is where I’d get you to hold my beer.

In 2022 I was diagnosed with Free Light Chain Myeloma. It sounds like science fiction, but sadly it’s a rare blood cancer, nothing fictional about it.

Myeloma is a sneaky critter, creeping about in your bone marrow for a while, only becoming obvious when it leaks into your bloodstream. In my case, I was exhausted, in pain, confused and spaced out. Myeloma had eaten away at my spine, broken my ribs, and overwhelmed my kidneys.

It’s rare, mostly seen in people over 70, making up just 2% of cancers. It’s incurable. You can treat it, but it always comes back. That makes it terminal — and, in my opinion, that makes it bullshit.

They say life begins at forty. I was in my early forties wondering how long mine would last. I didn’t win the lottery in health; I was diagnosed with Cystic Fibrosis at 30 and cancer at 41. But I hit the jackpot in other ways, the ways that count: I’m surrounded by great family and friends.

I have a supportive husband, an awesome young son, and a dog who thinks I’ve put my life on hold to hang with him on the sofa.

The NHS has been brilliant with the physical side. In the first year alone I had 25 rounds of chemo, multiple biopsies, X-rays, scans, what feels like a million blood tests, a stem cell transplant and I’m now on maintenance treatment with daily drugs and monthly infusions.

But the emotional side of things is less straightforward. There’s no medicine or treatment regime which can help you come to terms with an incurable cancer diagnosis.

That’s what I want to talk about today: the emotional impact.

How cancer doesn’t just affect your body, but your identity, your relationships, your mental health.

How psychological support has been as valuable to me as any drug.

And how often psychological support is overlooked.

Thankfully, because I’m considered young, I know right?, I accessed counselling quickly through a small local charity.

Ending Life’s Taboo was set up by a family who lost their loved one far too young and far too soon. The sessions, all funded by them, have been as valuable as any of the physical treatment.

In the early days after diagnosis, guilt dominated. I felt reproach for being ill, for if I died. I felt Shame - that in dying, I’d be failing. It still doesn’t make complete sense, but it’s tied up in what it means to be a patient when you’re also a mum, a wife and all the other things we find ourselves being. I’ve always felt Illness gets in the way of me being me, and especially in the way of me being the mum I want to be.

Counselling helped me confront that guilt, work through it, and mostly leave it aside.

It was also where I could share fears. At first I felt so ill I wasn’t sure I wasn’t dying then and there - and at that time no doctor would tell me that I wasn’t. I’d fixate on my breathing, convinced I’d simply forget to breathe. Fear dominated my thoughts — I’d see a dead fox on the road and obsess: did they feel it, were they scared, was it quick? That was a dark head-space.

Counselling gave me space to look at death closely. I even visited the hospice. I’m genuinely no longer afraid of dying, and that is so utterly freeing. Now I’m a lot more concerned with not living fully — and that’s far more motivating.

Counselling also gave me space to vent without worrying how it landed with loved ones. Serious illness and death are taboos, and living in the “Kingdom of the Sick” can feel isolating.

I lost count of the times I was told to “stay positive” when I asked about results, or told “you mustn’t think like that” when I admitted I wasn’t sure I’d see my son Harvey grow up. But that’s not being gloomy, it’s being real. You can be positive and hopeful, and still not make it through cancer.

Without the neutral space of counselling to voice those thoughts, that everyone else seemed to shy away from, I think I’d have lost the plot. It helped bridge the gap between the Kingdom of the Sick and the Kingdom of the Well and stopped me feeling cut off.

I was no stranger to illness, I’d retired a few years earlier with Cystic Fibrosis from a job I loved. Then along came a miracle: Kaftrio. A new drug that corrects the genetic fault in every cell of a CF body. It is insane how life changing that drug is.

I can’t articulate what it’s like to breathe freely after a lifetime of choking on clogged sputum - It is as unglamorous as it sounds. At first I wasn’t eligible for the drug, but the guidance changed and I got to try it. Within months I had new energy, fewer hospital stays, fewer treatments. I stopped one nebuliser that gave me back an hour in every day.

We started making plans. I was studying, applying to be a magistrate, considering work again. Anything felt possible.

And then — cancer. Just as I started to trust this new way of life, it was over. The timing felt too cruel. But I was grateful for Kaftrio too — without it, I couldn’t have had my transplant, I would have been too ill for most of the cancer treatment.

Counselling helped me process that heartbreak. Without it, resentment would have eaten me up. Instead, I now hold onto the miracles medicine can bring. Maybe one day there’ll be another miracle drug — for myeloma. If you can be unlucky twice in a lifetime, then why not lucky twice?

Counselling continued to help and kept me going through the roughest patches. During transplant complications, when my mouth and throat were too burnt to swallow and I was on tube feeds, it helped me hold onto the idea that this phase would pass.

High on painkillers, I’d daydream about simply sipping a drink in the garden, or drifting on my paddle-board with a mojito. Two years later, when my immune system was strong enough, I actually made it onto the paddle board — I can’t begin to tell you how good it felt.

Counselling helped me find hope too. In the whirlwind of treatment, it’s easy to forget to hope. Sessions gave me space to put down the immediacy of where I was at treatment-wise and imagine things working out, even against the odds.

It gave me somewhere to air anger and frustration too, so I didn’t push people away. Being more open has led to honest conversations with friends, strangers, even my teenage son. There’s so much to be gained from those truths.

Once my cancer was under control and I was on maintenance treatment, I had huge expectations for life “after.” But cancer doesn’t end, even if treatment does. It lingers in your body, your mind, your relationships. It slows things down. It strips things back. It changes how you see the world and, absolutely how the world sees you.

It’s nothing if not a perspective-giver. My life is slower and simpler than I’d ever imagined was possible. But its also not at all unpleasant.

Counselling helped me clear the heavy stuff so I could see the beauty in what remains. Now nothing matters more than hanging out with my favourite people — and what’s not to like about that?

Having the space to process the complicated emotions that come from such an uncertain future means I, and my family, can put fear aside and focus on living, for however long that may be.

Psychological support has made such an enormous, and vital, difference to me. And yet it’s still too often overlooked.

And this is where I’d love to wrap up with a snappy happy ending, but that’s not how cancer works.

The storm is always on the horizon. But thanks to decent psychological support, I get to make the most of the clearer skies while they’re here.

Words of our Ambassador, Ellie. Thank you for sharing such a powerful and inspirational account of how Ending Life’s Taboo has supported you.

Grants Awarded

Suffolk Community Foundation through Denbury Charitable Grant Making Programme - amount awarded £2,000.

We are pleased to announce that we have received £2,000 from Suffolk Community Foundation through Denbury Charitable Grant Making Programme. This amount will be used to support the charitable work we carry out at Ipswich Hospital.

Denbury Charitable Fund have worked with Suffolk Community Foundation for many years to help tackle poverty and homelessness and to support the most vulnerable. Over the years they’ve donated over £1 million in Suffolk alone through a combination of small grants and funding for major projects.

East of England Co-op Community Cares Fund Suffolk - amount awarded £3,000

East of England Co-op Community Cares Fund Essex - amount awarded £2,000

At Ending Life’s Taboo we’re pleased to announce that we’ve been awarded two grants of £3,000 (Suffolk) and £2,000 (Essex) by the East of England Co-op’s Community Cares Fund.

This grant will fund rapid access to counselling for our clients and will help make a difference to the adults up to 45 years of age in Essex and Suffolk facing a life shortening diagnosis.

Tracy Davies, Founder at Ending Life’s Taboo said; “I am always humbled by the support we receive from local grant givers. Receiving funding from East of England Co-op’s Community Cares Fund will enable us to continue to support the younger adults in Suffolk and Essex, that find themselves living with a life shortening illness.”

Each year, the East of England Co-op invests part of its profits to support communities across their trading area. The East of England Co-op’s Community Cares Fund, set up in April 2020, supports a diverse range of local groups and services and has supported more than 138,000 people.

Fundraising

East of England Co-op Local Giving Fund

At Ending Life’s Taboo we’re pleased to announce that the East of England Co-op's Coggeshall food store, and their customers, have raised £559.81 for us as part of their Local Giving initiative.

Over the last three months, they’ve been collecting donations for us in the store and raising awareness of the work we do.

This donation will fund our counselling at Colchester Hospital and help make a difference to young adults up to 45 years old in Essex facing living with a life shortening illness.

Charity Golf Day - 5.9.25

The late summer sun put in an appearance just at the right time following a very wet week. The golf event was hosted by Maldon Golf Club this year. Thanks to the catering staff who provided a fantastic buffet lunch. Thanks also to Ian Bennett, Club Manager, for all the organisation pre and on the day; the day went extremely smoothly. Everyone enjoyed the day and a fantastic £888 was raised (£200 of which was donated by Halstead Electrical Wholesale Ltd). Thank you to all the teams.

The winners this year were ‘The Four Cons’.

Thank you to all the teams.