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Daniel Hawkins was diagnosed in 2019 with pT2 N1 urachal adenocarcinoma of the bladder - a rare form of bladder cancer, at the age of 31.  Dan's cancer had probably gone undetected for some time, so was already quite advanced upon diagnosis.  Dan very sadly died in November 2023.  His story is written by his wife, Karla - who, with Dan's family and friends, wanted to share his story to help raise awareness and also to support the work of ABC UK.

 Daniel Charles Hawkins

 Best friend, son, husband and absolute legend of a human

 

 

 

 

 

 

In September 2019, Dan was diagnosed with pT2 N1 urachal adenocarcinoma of the bladder, he had just turned 31.  We had met at work and had been together for nearly 2 years, COVID was just starting to surface.  By the time they found the cancer, it had already spread through his bladder wall.  He was rushed to surgery within just over a week not knowing if he would keep his bladder until after the operation.

He was so brave during that time and his brilliant surgeons managed to remove the tumour and surrounding lymph nodes and amazingly recreated a partially new bladder from Dan's intestine, called a Neobladder.  Recovery was slow and painful but Dan didn't moan even once, even throughout the chemotherapy, and losing his hair.  He was just happy to be alive and with his friends and family and me.

Life returned to some normality, but nearly a year after another routine scan, his cancer was back, and had spread to his liver.  He was immediately placed on another long bout of pre-chemo, followed by yet another major operation.

In the background, his amazing consultant oncologist worked to try and understand his rare cancer (adenocarcinoma makes up only around 1% of all bladder cancers) and she managed to get Dan into a clinical trial that would sample his tumour, and managed to identify a BRAF gene mutation, which encourages cancer cells to divide and grow.

But it was short lived with more cancer cells appearing in his lung, yet another operation and then immunotherapy treatment (where the drug retrains your immune system to target the cancer cells), but after 12 months that hadn't worked and there was more growth.

With further operations out of the question because the cancer growth was happening too fast and Dan just couldn't sustain invasive surgery, his consultant decided to try and target the faulty gene itself and reached out to a pharmaceutical company for compassionate access to a targeted drug combination that would turn off his BRAF gene. For the first time in years we let ourselves hope.  This had to work, we were SO excited.

But that's not how life goes and, after 2 months on the new medication another routine scan showed the cancer had spread further, and on that same day we were told Dan had days to a week to live.  Our future lives together over in a conversation that took minutes.

Dan was with us for much longer than expected and fought so hard.   In his 35th year he achieved so much more than so many his age.   During his illness he had begun performing stand-up comedy (he is great), learnt to teach yoga, took an intensive AI coding course and even dabbled in DJing, he was still passionate about life and did as much as he could.

He had even sat his New York bar exam during chemo and passed with some of the highest grades.  He has never once lost his sense of humour and he never failed to support and comfort me no matter what.

He has about a million best friends made from childhood and throughout all the key stages of his life, college, uni and work.  People just gravitated to Dan because he really genuinely loved his friends.

Dan's favourite things in the entire world were sour squirms sweets (M&S), teasing his family and me, beers with his friends, Chelsea FC, his grey blanket with holes in (I'm keeping that, Dan), curries, hassling his friends, and most of all his people.

We fell in love but never before felt the need to marry to show each other how we felt, but we decided to get married a week after his diagnosis, it just felt right. The wedding was organised within a couple of hours of our decision, with a local registrar who came to his family home and we had close friends and family surrounding us.

His goal was to make it to his 35th birthday on the 5th September and those who knew Dan, know he's pretty good at reaching his goals.  And he did.  

Dan passed away at 7am on Thursday 23 November 2023, with me lying next to him and holding his hand.  His favourite podcast playing softly in the background, with my voice telling him how loved he was, he was peaceful.  He battled against his cancer until the very end.  

We wanted to share his story to raise awareness.

Dan's family and friends have all helped to raise money to make sure every effort is made to uncover and ultimately destroy this horrible quiet disease - so that more wonderful people like our Dan can keep making everyone laugh and connecting people in the way that only he could.

Bladder cancer has one of the highest recurrence rates of 80% and we think that Dan's cancer went undiagnosed for many years.

So - please, please, remember to always get anything out of the ordinary happening in your body checked out.  Dan had blood in his urine and was going to write it off as caused from lifting heavy weights.  If something doesn't feel right don't take a first diagnosis from a GP as a final conclusion, get everything investigated.

Adenocarcinoma of the bladder is a very rare type of bladder cancer. Around 1 and 2 out of every 100 people (1 to 2%) diagnosed with bladder cancer have it.  It is cancer that begins in glandular cells that are found in the lining of the bladder.  Glandular cells in the bladder make mucus and other substances.  It is often invasive - that is, it can move outside the bladder wall into other organs of the body.

Action Bladder Cancer UK would like to sincerely thank Karla, and all of Dan's family and friends, for working so hard to raise funds to support our work and also for helping to raise awareness of a rare form of bladder cancer.  Thank you for sharing Dan's story and details of his treatment journey.