What is one thing you wish you knew before you started treatment?

On Wednesday 12th August 2020 my husband Did (Dave) went to play badminton with his eldest daughter Lydia and afterwards developed a flicker in his eye. It was a really hot day and he thought it was due to dehydration. We went away the following weekend and Did as we all call him said he had a dull feeling in his head. We went out for a run over the weekend and on the way back he lost his turning, we laughed as Did had a great sense of direction. We continued the weekend having fun with friends but when we got home things continued and we knew things weren’t right so we contacted the doctors who dismissed it as high blood pressure and migraines. A couple of weeks later they phoned him and said we have good news it’s not migraines. He answered I know I’m in hospital I have a brain tumour. There was silence!

Fast forward 2 weeks to the August bank holiday Monday when he got an unbearable headache we managed to get him booked in for blood tests. Did went to the doctors, I went to work. Every day we spoke when we were at work, he rang me as usual but said that something wasn’t right. I insisted that he meet me at home so I could take him to A&E. This was in the height of the pandemic so I wasn’t allowed in. I said please tell them all the symptoms not for once thinking this was a brain tumour but was very worried. 5 hours later he rang to say he was having a scan and could I pick him up after. On my way to collect him I got another call to say take our daughter Sydney to her Grandmas and please bring an overnight bag. 

Obviously I had a sudden overwhelming panic but tried to stay calm. When I arrived I wasn’t allowed to enter the ward due to covid, I explained I had a message to meet my husband - he came to the corridor and I could see the fear immediately. He stood there in the middle of the corridor and said he had a brain tumour. To this day that memory makes me feel sick. It felt impossible to leave him so vulnerable and go home. I had to explain everything to the older children whilst one of the worst days of our lives unfolded. How could this be? How did it happen?

The next few days was a blur I carried on as best as I could but Did had to stay in hospital and within a week he had an operation to remove over 90% of the tumour. I had a list of so many questions to ask having watched my father in law go through cancer. I was aware of glioblastoma after a friend had lost her dad to the same tumour over 10 years ago and after many conversations in the past, I knew what we were facing. Could this be happening to us too? I pleaded NOT. On the 21st Sept we were told that Did had GBM! I remember that day so well. We were told the average prognosis was 12-18 months. We never asked for his prognosis so we were all devastated.

Straight away we knew we had to try to beat this bastard! We started to research and realised we could get more tests to identify best treatment options outside of NHS protocol but this wasn’t available with help from his UK medical team.

Did was doing so well until he had the first covid vaccine and then his tumour grew back meaning he needed to have a second surgery. Despite battling against covid travel restrictions Nicki and Did travelled to Germany ** times to receive treatment in Cologne at the IOZK clinic and to Tubengin at the Cegat clinic. Did was always about quality of life, living everyday, making every memory and he did that winning to the end and on the 23rd Oct we got him down to London to see his favourite team Chelsea before he passed away at home surrounded by his close family on the 6th Nov. 

We met Nicki and Did in Tubingen whilst we were all visiting CeGat but we had been speaking for months before exchanging information. Nicki has a wealth of knowledge about GBM and a fierce determination to improve the outcome for all patients. Since Did sadly died Nicki has been campaigning and fundraising for Brain Tumour Research including a skydive, a ball and the London Marathon. We caught up to ask Nicki some questions so that she can pass on her hope and hindsight:

I wish the NHS actually discussed thing in more detail. As a family we panicked and wanted the tumour out! I’m so mad that no one discussed the options of the way the tumour could be stored after removal. (This is done at centres where they do more research) it really is a postcode lottery. The responsibility is put on the patient or family to push for the tumour to be flash frozen but how could you know that at the beginning of all this? We put our faith in the experts and we are pushing for the experts to know the treatments that are available outside of the NHS so that patients have choices. 

What was the most difficult part of your journey and how did you overcome it?

One of the most difficult parts, was the actual diagnosis, my friend lost her dad to this over 10 years ago and also her good friend. I knew from what they went through that it was horrific. I had many conversations with them. In a way this prepared me but I couldn’t believe it was happening to my young husband and us as a family. How my husband coped I’ll never know. We had so many conversations and tears. However he always remained so strong and determined and to this day because of his love for life we love life every day appreciating every moment!

What advice would you give on how to best support a loved one going through brain cancer?

Never give up hope, some going through this journey are defying the odds!

Join as many support groups as possible.

Seek second opinions. Don’t listen to the consultants about integrating COC and other support like Patrice Surley.

We were scared to integrate early fearing it would hinder chemo but in reality chemo was Stopped anyway and a break after 3 weeks meant no trial. This again was a massive blow to us!

What was your biggest self-discovery or revelation after Did were diagnosed?

To never give up hope! Determination for the kids and rest of the family. Winning every step of the way and still living life to the full! Not letting anything get in the way, including covid!

How did Did find the strength to go through the treatments?

The strength was the children and me his wife his Dad and the rest of my close family and friends. At the side of his bed he had a picture of them all to see every morning when he woke up.

How did you deal with the anxiety that surrounded your diagnosis? 

He cried cried, I broke down. He was terrified but then from within he found the strength and was determined to win this for all our family and for himself! he loved life to the full and always did and he didn’t want that to stop. We were in the middle of covid but he refused to stay indoors, he wanted to continue to love and live life to the fullest and throw everything at it. His favourite quote is a Rocky Balboa quote and is where winningfordid came from:

“Let me tell you something you already know. The world ain't all sunshine and rainbows. It's a very mean and nasty place and I don't care how tough you are it will beat you to your knees and keep you there permanently if you let it. You, me, or nobody is gonna hit as hard as life. But it ain't about how hard ya hit. It's about how hard you can get hit and keep moving forward. How much you can take and keep moving forward. That's how winning is done!” 

What did you do to help you meet the challenges of the treatments?

I engaged with others in the same situations to learn and gain support from wherever I could. One of my first contacts from research by my mother in law Val (when I was in no place to even start research) was an inspirational piece in the media by Laura and Nicola Nutall. Nicola became our rock and Did was so inspired by Laura.

At this point Did had completed 3 months of chemo and was devastated that children were going through what he was. He never once complained. Every week still running 5k and going to the gym. We were all in awe of him as an amazing husband and Dad.

What did others close to you do for you that made a difference? 

At first we kept it quiet but after a few weeks of research and a diagnosis of grade 4 unmethylated whilst being told by his medical team to just go and enjoy a walk in the park because there was little hope, we knew we had to look at other options and not one of us were giving up. We entered into a world of research. After talks with a close friend she suggested we set up a GoFundMe as we didn’t have the money to do treatment abroad. This was a big decision as we didn’t like to ask for money. Did/we as a family were blown away with the incredible support of this reaching over 30k in one week! We then set up Teamhopkins winningfordid with social media and had friends support with this. Also so much support of fundraising, again in the pandemic meant we couldn’t do much so it was all on line donations. The page was set up in December and by Jan we were at the IOZK clinic in Germany. 

We headed to Germany within 3 months of the diagnosis in the middle of the pandemic to a German clinic called IOZK. With everything being thrown at us to stop us going, we were determined to get there and gained the support of our MP who helped make this happen.

Did you join a support group? If so, how did it help?

Initially I joined so many but found them overwhelming sometimes not knowing which way to turn, eventually I found the right ones for my head space. One that was set up was strength in numbers - it’s a small group, a mixture of the caregivers to adults, young adults and children with brain tumours Did was always determined he needed to help find a cure for children and young adults going through what he did. He said it was horrific even though he faced it full on he couldn’t imagine the pain of what the kids had to face. It’s something that no family should have to and funding for research needs to increase now. 

What three things would you tell a person who just yesterday learned of their cancer diagnosis?

1. Never ever give up hope and stay positive
2. Life is for living and live every single day the best you can
3. Research as early as possible and seek second opinions

What did you change in your life to support any medical treatments you got - dietary changes, activity changes, supplements?

Keto diet (but Did ate healthy food beforehand)
Patrice Surley put together a supplement protocol
Gym (Did kept up with his exercising)
5k once/twice a week
Care Oncology
Lived life still to the full
Cherish every moment
THC & CBD

Were there any particular blogs, organisations, websites, journal articles, or people who were especially helpful with support and/or information?

Doing it for Laura website
Facebook groups
Twitter
Brain tumour research charity
Brain tumour charity
Strength in numbers facebook group
Cegat
IOZK
Patrice Surley
COC
Inside Stuarts Head website
Lots of different books
Hope House (life rafts support group) 
Team Verrico 
Second opinions and worked with an oncologist privately to get extra treatment support 

What is something that you’ve found has given you hope during this time?

That there are people defying the odds and living beyond the statistics of survival

Get a second opinion before first surgery, however back on that initial day it was so scary that all my husband and we as a family wanted was the tumour out. No one was there to discuss how the tumour would be stored, or what possible options there might be with the sample. We asked if they thought the tumour was benign or malignant. We were told malignant at that point so I knew grade 3/4. If we lived in a London postcode under Queens, Imperial or Royal Marsden I genuinely believe we would have had more options and support to integrate treatments above SOC in the early days.

With the benefits of hindsight. if you or a loved one had to do it all again, what would you do differently when going through your diagnoses and treatments?