I was diagnosed in July 2016 with stage 4 bowel cancer, aged 32, after being admitted for emergency surgery to remove a large tumour in my bowel. By the time they found it, the cancer was already in my liver and my lungs.
I thought they must have got it wrong. I checked all the risk factors, I didn’t fit the criteria. It is lovely to be special, but being in the 2% of cases that occur under the age of 35 isn’t exactly what I was aiming for!
The last 18 months since my surgery have been filled with 24 cycles of chemotherapy and some pretty daunting surgery to remove 40% of my liver.
Chemotherapy feels like you’re swimming through treacle. You're tired but you can't sleep, you can't concentrate, your mouth hurts, your food tastes strange. Normal everyday things are so much harder. And then there are the side effects that are just plain weird, no touching or drinking cold things or the never ending pins and needles in your feet.
Last November, after all that treatment I got the crushing news the cancer was still growing. It had slowed down but it wasn't under control. Despite the chemo I still felt strong and I was fired up, ready for more treatment. I'm still young, fit and healthy, I was ready to try again but, devastatingly, the doctors said they'd exhausted all the options. That was it, all they had left was a maintenance drug.
I’m only 33, I don't want maintenance.
Undeterred, I went to the Sarah Cannon Research Institute in London for a second opinion. The doctor there said I could be a great candidate for a phase 3 trial they were running, testing a combination of 3 biological therapies to target the cancer cells. It sounded like it was made for me, it was targeting the specific gene mutation that had caused my cancer. I then suffered a further blow when I found that I would not be accepted on to the trial as I'd had one of the 3 drugs before as part of my earlier treatment. I was devastated, it seemed so close. My doctor tried appealing to the drug company for compassionate usage, but this was rejected.
This triple combination of drugs is already available on the NHS for other types of cancers caused by the same gene mutation as mine. However, as the drugs are still in the trial stages for bowel cancer the NHS will not fund my treatment. The only option I have left is to try and fund the treatment myself but at over £22,000 a month, that is a terrifying amount of money to have to try and get together.
So hopefully, that’s where crowd-funding can pull a rabbit out of a hat that seems to be vanishing into the distance. Please help with anything you can – every penny will be more than I expect.
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