Why become a Story Volunteer?

Young people affected by cancer are at the heart of The Tom Bowdidge Youth Cancer Foundation and we want every young person to see their cancer experiences reflected in our campaigns, appeals and stories we share.

Story volunteers are essential to help us:

• Raise awareness of teenage and young adult cancers. There are over 200 different types.
• Highlight authentic and diverse experiences of real people
• Raise awareness of how we support young people and their families affected by a cancer diagnosis.
• Inspire or give hope to other young people affected by cancer
• Raise awareness of our campaigns and appeals in order to engage with various audiences to support our cause.
• Applying to be a Story volunteer will only take up a small amount of your time. Before you start, please have details of your cancer experience, diagnosis and treatments (if applicable) to hand.

What’s involved?
If you’ve been closely affected by cancer and are comfortable sharing your story in the media, on our social media platforms, through filming, or in printed material, we would love to hear from you. You might appear in one of our campaigns/appeals or in the local press.

Will I definitely appear in the media?
No, not necessarily; not all stories will be used or appear in the media. It can be difficult to predict why we may need to use your story, but to help us raise awareness and funds for the charity, we need as many stories and photos as possible. We need to be able to continue supporting other young people affected by cancer and therefore need as much information as possible.

What’s involved and how to apply.
We will need

• A few short paragraphs about your cancer experience
• Details of your diagnosis and treatment (if relevant), and it is helpful if you have names of any clinical trials and treatments involved.

Don’t worry about making your story perfect before submitting your application.

Fresh out of Uni in 2023, I was offered my first job in the NHS as a Medical lab assistant… and I was ecstatic! It was a career-focused role for me with a lot of potential to progress and eventually branch out to better roles – so I took it. I worked 5 night shifts a week and settled in very well, regardless of the upside-down routine, and was really enjoying the tasks and the work environment.

However, around 7 months into work, I had a weekend where I wasn’t feeling quite right. My tummy felt bloated, I felt pain and discomfort, and I couldn’t use the loo properly either – I had to call in sick for a day, had some OTC medicines and thought it was probably just because of a bad takeaway or something. Anyway, since it didn’t get much better, I thought I’d power through it and head to work… 2 hours into that shift, I had to go to A&E straight from the lab I was working in. A few hours in A&E, things got serious… I was seen by quite a few doctors in the span of 2-3 hours, and none of them looked too happy after having a feel of my tummy. Eventually, I had an ultrasound, and it turned out that my spleen was over triple the normal size, and my bloodwork was all over the place, especially my white blood cells. I was sent home that morning with stronger painkillers and called back in for a biopsy later in the week.

Over the next month, I had an array of tests and finally in June 2024, I was diagnosed with Hepato-Splenic T-Cell Lymphoma – which is very rare subtype of lymphoma that only 10 people in the UK contract every year. I started treatment on the 1st of July at the Royal Marsden and had very intensive chemotherapy for the next few months to try and reduce the size of my spleen. Many other symptoms had previously gone unnoticed too – heavy night sweats, fatigue, weight loss, appetite issues… it all made sense once I got diagnosed.

Around September, after my third cycle, my original lymphoma had been reduced from 15% in my bone marrow to 5%, but my spleen had gotten even bigger, to the point where I couldn’t manage eating, sleeping, walking or anything physical without feeling immense discomfort. Also at that time, the doctors thought I may be too weak to survive a Splenectomy, so taking it out was deemed too risky. I was told to prepare for the worst and do all that I wanted to over the next 6-12 months – it may have been all the time I had left.

However, my family and I pushed for a splenectomy, and in December, my spleen was removed, weighing 5.2kg rather than the usual 250-500g. The surgery led to immediate relief and over the next few months, I recovered from that quite well. Still, my original lymphoma was unresolved as the splenectomy was just symptom control, in a sense… so, the amazing team at the Marsden worked out another solution.

To deal with the lymphoma in my bone marrow, my consultant suggested a bone marrow transplant as it was seen to make a big difference in similar cases and even though it was risky and rather experimental for my case, it gave me the best chance of coming back. Fortunately, my younger brother was a full match on all 4 parameters, so he could donate his bone marrow to me – no lists, no wait, and the best match possible. I felt blessed beyond words.

After a couple weeks of extreme radiotherapy and chemotherapy, my bone marrow transplant occurred on the 6th of March. It was one of the most difficult experiences of my life, but I was discharged around a month later and have been on the upswing since then. The recovery has been slow with a lot of medication and side effects, but it has been steady, and I’m very proud to say that almost exactly 2 years since I started my first job in the NHS, I have been re-employed in the same lab that took me in before.

Things are finally getting back to normalcy.

There were experiences during this whole period that I may never bring up again, to anyone. There have also been experiences I want to shout from the rooftops for everyone to hear. It’s been a long, tiring journey but I’m almost at the end of it. Family, friends and well-wishers play a massive role in you getting better… but staying strong yourself is the most important. Never stop believing.’