Craig from Witney in Oxfordshire was diagnosed with a grade 3 astrocytoma in May 2022 after months of debilitating headaches. Doctors initially thought the 36-year-old was suffering with depression weeks after news he and his wife Janin, were expecting their second child. He has since undergone two operations followed by radiotherapy and chemotherapy treatment – during which time Janin gave birth to their son, Rory. In October 2023, the family were told Craig’s tumour had grown. As he awaits a third operation, the family are raising funds for private treatment overseas as well as campaigning for more investment from the UK Government into research for the disease.
Here is Craig’s story as told by his wife, Janin…
Craig and I met in Australia about a decade ago. He’s from the UK and I am originally from Germany. We were both living overseas and working in the travel industry. We spent our time between work and travelling, ticking off French Polynesia and Fiji as well as exploring Australia. In 2016, we moved to the UK together.
We got married in 2017 and welcomed our first son, Luca, in 2019, both working in jobs we enjoyed.
Craig was the epitome of health. He took up running during lockdown and went on to run a half marathon after a year of running and was set to take on the 26.2 miles of a full marathon in 2022. However, as so often is the case, life had other plans.
He started to get bad headaches which often meant he stayed in bed for most of the day. By March this was accompanied by vomiting. We had various same-day appointments with our GP, never seeing the same person twice, each time Craig was prescribed medication for migraines which didn’t help. It became a pattern of GP appointments and different medications, trying to get the headaches under control.
By the end of April, I couldn’t take it any longer. Surely someone who never had a migraine before couldn’t all of a sudden suffer this badly?! The tip of the iceberg was seeing Craig help Luca, who was then two, with a puzzle. I thought he was being playful, putting the pieces in the wrong places but when I questioned Craig, he didn’t realise he was getting it wrong.
Two months after his first appointment Craig was back at the GP surgery, this time I went with him, I needed answers. This time we felt listened to, as we listed his symptoms the doctor made a referral for a CT scan ‘just to exclude the nasty stuff’.
We had recently found out we were expecting our second child and were both over the moon.
Craig was seen on 12 May. The consultant checked him over and was sure that Craig’s symptoms were depression and hinted a CT scan may not be necessary. Suggesting that Craig may not be as happy about the news of another baby, as he was making out.
I questioned Craig. He was such a loving and involved father to Luca and we had been trying for a second child. We both wanted it. I didn’t believe what the doctor was suggesting. Craig settled any doubt and said he was happy.
We pushed for a CT scan which he had the same day. A call the following morning, Friday 13th, asked us to head immediately to the hospital. We arrived to news that would change our lives forever. Craig had a brain tumour the size of a fist. Doctors were surprised that he was able to walk and talk, and he needed surgery.
Operating on the tumour came with extreme risks of life-changing injuries, despite these warnings, Craig agreed on one condition, he wanted to see Luca before going into theatre. At this point we didn’t know if he’d make it through the procedure to meet our unborn baby.
Finally, after a nine-hour craniotomy, Craig was back on the ward, already joking with the nurses. He was able to move all of his limbs and we were told that they removed most of the tumour. Three days later he was back home.
Results of the biopsy revealed his tumour is a grade 3 astrocytoma and survival rates for this type of cancer are pretty bleak. On average patients in his age bracket will only survive for three to five years from diagnosis. In Craig’s case this means he will be lucky if he sees his 40th birthday - something I simply can't bear to even think about.
He’s since had a second surgery to fit a shunt to drain the build-up of cerebral fluid on his brain. Six weeks of radiotherapy followed and 12 rounds of chemotherapy. All gruelling treatment but Craig only complained once.
I was adamant I was going to give birth at home as the hospital held unpleasant memories for our family. As Craig began his second round of oral chemotherapy, on 20 November 2022, I gave birth to Rory at home.
When his chemo finished in September 2023, we were excited for the prospect of our lives to return to some kind of ‘normal’. Less hospital appointments and having the freedom to plan our immediate future. On Friday 13 October (I’m not usually superstitious but there seems to be a theme here), our hopes for a future together were crushed once again.
Chemotherapy hadn’t worked. A routine scan showed a re-growth of Craig’s tumour and we are waiting for the date for a second craniotomy. Overall, a third invasive procedure which contains the same risks as before.
We’ve been told that he’ll need more chemotherapy, which would be PCV chemo.
We have very clearly been told that, for most patients this is not as effective as temozolomide which he had previously, however currently there are no other options available on the NHS.
To fight this disease, we have taken matters into our own hands and found an immunotherapy treatment in Germany, which we are hoping Craig will have alongside what we are already doing. But, of course, this comes with a huge financial cost.
The immunotherapy will use Craig’s own blood and cells of his tumour to create a personalised vaccine that can teach his immune system to attack the tumour. For the first year the vaccines are injected every month and less frequently thereafter.
As the treatment is overseas, there is no private insurance that will cover the costs. We have estimated needing around £100,000 to fund the first year. In addition to this will be the cost of travelling to Germany each month to access it. We can’t possibly afford this on our own and I really want to be able to tell my children that we have done everything to keep their daddy with us for as long as possible.
We have also raised more than £6,000 towards researching the disease. People tend to have no idea about the disease until it affects them or their loved ones. The prognosis for patients is often poor, we are living with that as our reality.
By sharing our story, we hope to put a stop to the underfunding of Government investment into research and bring brain tumour treatments in line with the advances we have seen in other cancers.
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease since records began in 2002.
Brain Tumour Research is determined to change this.
Together we will find a cure