We are a young couple, used to go for long walks, having active jobs and going to the gym everyday. We have been married for the last 6 years. This is a long post but we appreciate you taking the time to read our story as we are a very rare case.

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Back in mid December 2021, after trying to type a message on his phone and reading it back to find it was not correct (the words were all repeating or the wrong word in the sentence), Dan went to the local GP who immediately referred him to hospital for a MRI & CT Scan.

This was when they discovered he had a massive Grade 4 Glioblastoma Brain Tumour and swelling on the brain. This was a terminal diagnosis and we were told any treatment would just be to try to prolong his life but that there was no cure. The tumour is classed as 'Un-Methylated' which means that its very resistant to Chemotherapy and that any treatment might not work at all. It is also classed as a 'Wild-Type' which means it can grown back very quickly and spread. As you can imagine, this was devastating news. They sent us home with the highest possible dose of Steroids to try to bring down the swelling before it would be safe to operate. The operation was planned for 10 days later.

At this point we realised Christmas (which we both love) was going to be very different that year! The average survival time is devastatingly short – just 12-18 months. Only 25% of glioblastoma patients survive more than one year and 5% of patients survive more than five years. There are only a handful of cases of an Un-Methylated Wild-Type Glioblastoma diagnosed in the UK each year.

So, a couple of days pass and I catch Covid (not bad for me as i was lucky with no symptoms) but bad news as i then had to self isolate from Dan as we couldn't risk him catching Covid in his state and before he was due an operation.

After 2 days apart, (very tough for us having met working together and living/working alongside each other since we became a couple over 7 years ago) Dan had a seizure in the early hours of the morning on the 22nd December and was rushed into hospital. He spent the next 7 days pretty much unconscious in Intensive Care at hospital and I was unable to visit him until my isolation was completed. At this point Dan has lost all Speech ability and the control of his right arm. We couldn't talk on messenger as due to where his tumour is, it effects speech and typing/writing so we had no contact over Christmas & New Year.

I finally get out of self isolation and head into hospital to visit Dan the morning of his operation. I am there for about an hour before they take him away for the operation.

A very nervous 5 hours go by and then the neurosurgeon rings me to tell me the operation went well and Dan is in recovery and I will be able to visit him in a few hours time.

Not knowing what to expect, I head into visit Dan. He is awake and can speak maybe 3 words every now and again. The pressure was now reduced in his brain which allowed him to get small words out. There was no promise that speech would come back or the control of his right arm, but it was something to work on over time and see where things got to. From now on, Dan would have Epilepsy, so was on anti-seizure medication.

After 2 days, another patient on Dan’s ward tested positive for Covid so the hospital shut down all visitors. At this point Dan decided his recovery would be much better at home where he was free to walk around a bit and have fresh air rather than be locked in a hospital ward, so he got discharged and we headed home.

Dan spent 5 weeks making good progress with both his speech and arm control, (spending time every day trying to move his muscles and do different types of mental tasks such as saying the alphabet, which we only got a few letters in to start with but by the end of the month could manage it all, and counting to 10 and when that was possible, then trying to get to 30). Then Radiotherapy & Chemotherapy were going to start.

This meant every day for 6 weeks, driving an hour out to the hospital for Radiotherapy treatment then an hour home, as well as taking Chemotherapy Drugs from Monday-Friday each week. This was alright to start with but over time the fatigue from treatment builds as the mask which they use to keep you still during Radiotherapy (this gets made before any treatment happens, so happens when you're skinnier) was getting tighter from Face Swelling caused by water retention from the Steroids which he has to be on to keep pressure off of his brain. Dan had to miss the last 2 days as his anxiety was getting too bad and he was struggling to breathe with the mask on. You cant make the mask any looser or move it as the treatment is so precise that a millimetre in either direction could cause Dan to lose control of one side of his body permanently or loose speech forever. Radiotherapy kills healthy brain cells as well as targeting the tumour so already causes damage to the brain. During this time the Seizures were getting worse and on a couple of occasions resulted in being taken by ambulance to hospital where they increased his anti seizure medication multiple times. The seizures were still not under control and Dan was put on a second medicine to try to help reduce them. With the maximum dose of both Anti-Seizure medications being reached, we were looking into other options available to help.

Once the initial Radiotherapy and Chemotherapy was completed, there was a month or so to try to let the swelling from treatment go down before the next stage started. One other Anti-Seizure medication was added so now Dan was on 3 types!

The next stage was 6 months of a much higher dose of Chemotherapy Drugs. (Which we are currently in the middle of as they keep delaying treatment due to low platelets). The seizures are still not fully under control and Dan was put on a FOURTH Anti-Seizure Medication to try combat them, or at least reduce the frequency and severity.

As expected with the tumour being an Unmethylated, Wild-Type Glioblastoma Grade 4, it had grown back. It had gone deeper into his brain & also further down. We went to Newcastle RVI for a second attempt at a Craniotomy to remove some of the tumour. They were be unable to get it all & there were huge risks.

Back home after having a second craniotomy. Dan was paralysed down the right hand side and speech much worse than before.

With things going downhill, we withdrew the money we have raised so far and made our payments to Brain Tumour Research, Macmillan and to the parish Church as we wanted to do the first batch so Dan could see it go to the charities.

We believe his tumour could have been misdiagnosed in scans and symptoms 2 times whilst we were working on Guernsey, which is very frustrating! We were working there for 2 years trying to save up some money, then came back to the UK and used our own savings to live off whilst looking for new jobs, rather than claiming benefits. We found a new job and were happy in it until the diagnosis in December 2021. Dan had to give up his driving licence, which was gutting from him as a car lover.

However, now unable to work due to his condition and prognosis, he tried to apply for ESA (Employment Support Allowance) but the rejected the claim as it is only based on the last 2 tax years. We send an appeal to the as, Guernsey has a reciprocal agreement for benefits with the UK, though the UK DWP says this doesn’t cover our situation, so even though we paid national insurance on Guernsey and in the UK, so Dan has paid 28 full years of national insurance which is about 93% of his entire pension fund, and he will never reach the retirement age to claim it, they say we are not entitled to it. This seems like we are being punished for trying to do the right thing and not taking money when we were at a point where we had savings we could use. The DWP did agree that the decision seemed unfair but that the rules are there and can't be changed.

On the 30th August 2023 my beloved husband, soulmate & best friend Dan passed away peacefully in his sleep at home in my arms.I spent his last night telling him how much I loved & adored him. I don’t know what to do without you Dan or how to process this pain but I know you’ll be looking down on me and keeping me safe, protecting & guiding me like you always have done. You’ll be in my heart & mind in everything that I do always. I LOVE YOU SO MUCH & I’m so sad that for now, we have to say goodbye. Sweet Dreams my beautiful angel until we meet again xxxxxx

Any money and awareness raised for this devastating type of tumour would be greatly appreciated and will hopefully save lives in the future.