It’s that time again, Moshers!
Our latest tale comes from Donna, one of our very first supporters who joined the group back when it all began and helped spread the word so we thought it’s only right we shed the spotlight on her this week! Donna has been diagnosed with a rare type of cancer and wants to get the word out and help raise awareness of it.
Donna is 39 years old and 2026 is her first time going to Download, to any festival in fact! She kept meaning to go but with a bunch of chronic illnesses, young twins and a husband who isn’t really into the same music as her, she figured she would get around to it at some point.
In 2024, Donna was diagnosed with Stage 4, high grade 3, aggressive Neuroendocrine Carcinoma of the gallbladder invading into 3 segments of her liver measuring 15cm x 9cm x 5cm and given a prognosis of 12 to 18 months by oncology. This all started on 28th March 2024. At this point, Donna was told she would be on palliative chemotherapy and that surgery wasn’t an option.
Donna had no symptoms as such, She was on strong medication to treat fibromyalgia,tietze syndrome and SI joint syndrome so they were probably masking aot of the side effects or pain. The only thing Donna really noticed was any different was a niggling pain in her upper right side of her abdomen but when she went to the GP was told its probably her fibromyalgia, that she needed to lose weight and that her tests were ‘fine’.
She persisted and kept going back to the GP as she wasn’t improving and consistently felt like crap and they eventually gave her an ultrasound. The ultra sound results were ‘misplaced’ by the GP and when Donna chased the results, they said it was abnormal, potentially a perforated gallbladder and she was sent for another scan. Between the first scan in January 2024 and the second scan in March 2024, the tumour had grown from 4cm-15cm.
The whole of 2024 was a whirlwind of chemo, appointments, scans, blood tests, the whole works. In her original post to the group earlier this year, Donna told us:
‘I am a bit of a control freak and wanted to plan my own funeral and add some quirky bits to it to celebrate my life.’ I started taking notes of everything I wanted to do before I died. Things I wanted to pass onto my children, knowledge and make memories. My mental health was a complete mess but I tried so very hard to stay positive and focused on what was to come and kick ass through the treatment. I was scared as hell but Im a stubborn b*tch and wanted to prove the medical team wrong. I was more worried about my children being left without their mum and my husband being able to cope. It was terrifying.”
Despite being told that surgery was not an option, Donna met with Prof Nigel Jamieson, a surgeon who was very keen to take on her case. Neuroendocrine Carcinoma is a rare cancer in it’s own right but even more rare at Donna’s age and in the locations she had it. Even the level of aggressiveness was unheard of. Prof Jamieson was the light that Donna needed. He fought for her behind the scenes and offered her a deal. If she lost 40kg (that’s 6 stone in “old money”) he would be willing to get her on the table to do the surgery. Happily, Donna took on the challenge.
Donna went through six cycles of chemotherapy Carboplatin/Etoposide. Three days of chemo with a twenty-one day break. Her hair started to fall out after the first cycle, so her daughter shaved it for her! In keeping with her awesome fighting spirit she told us ‘I thought it was going to be very emotional but it was a lot of fun!’
By September 2024, Donna was half way there with the challenge Prof Jamieson had set her. She lost 20kg but it wasn’t happening fast enough and she was referred for an endoscopic sleeve gastroplasty with another surgeon (referred by Prof Jamieson). Donna was also put on a liver de-bulking diet by dieticians and was only allowed two shakes and one cup of clear soup per day. Determined, Donna was not backing down without a fight.
On the nineteenth of November 2024, Donna got her surgery. The chemo had shrunk the tumor by more than half the size from initial diagnosis. and now her gallbladder was removed, along with a third of her liver. It was open surgery and she now has a rather impressive battlescar from her breast bone to her belly button and around the side! She was told she would be in hospital for around 6 weeks but they let her home after 10 days as she was recovering very well.
Here’s the good bit, Moshers…
The pathology report came back showing that they got all the cancer out with clear margins, including the separate mets! Donna had another scan and it showed that there was “No evidence of disease” or NED for short. DONNA WAS IN NED!
The medical team could not believe it, neither could she. They had given her a less than 1% chance of things going the way they did but she did it! Her team did it! The chemo did it!
Now, because of the type of cancer it is, stage and grade, it will come back at some point. Ultimately, sadly, it is a terminal diagnosis, due to the way it involves the lympathetic system. The longer Donna is NED the better. Donna receives regulars scans to ensure they can catch it as soon as it starts to raise it’s stupid face again. But as of March second 2026, the scan is still clear and Donna has been NED for sixteen months.
‘It has been a crazy couple of years with a whole shit load of emotions. It’s definitely had a very detrimental effect of my teen twins mental health which is awful. I have completely changed my outlook on life and have very much adopted a YOLO type attitude! I am much more positive person and grateful for every single day. Things that I used to “worry” over seem so small in comparison. I am so very lucky to have Prof Jamieson on my team and I owe that guy my life. He fought hard with me when other surgeons were not willing to give me a chance. I will be forever in his debt.’
Donna is still battling long term side effects and impact on her health. She has eight hour infusions of magnesium due to not being able to absorb it orally. She’s in chemical menopause and her mental state is foggy and she’s battling with the chemo brain but as Donna said she’s ‘Not planning on going anywhere anytime soon! And most importantly I AM GOING TO DOWNLOAD’
Everyone here at MATM is here for you Donna and cant wait to meet you at Download Festival this year.
Mosh on!
