“We could live again, even if a different kind of life,” said the woman after her husband’s brain tumor diagnosis.
Following Nick’s diagnosis, they had two unforgettable vacations cruising around the Norwegian fjords for biking, kayaking and glacier walking, as well as taking the Eurostar to Marseille and two breaks in Mallorca, in. leaving from quieter airports to minimize the risk of Nick having an epileptic seizure.
Passionate about cycling, Nick attended the final stage of the Tour de France in 2010 for his 40e birthday and after his diagnosis he would still like to put himself to the test and cycle around 20 miles through the rolling Hampshire countryside a few times a week, as well as a bike trip to Mallorca – and never have a fit by doing so.
Diane said: “At the start of our relationship, life was fun and exciting and we knew we had a long and happy future ahead of us. In those five years after Nick’s diagnosis, we could relive, albeit a different kind of life regarding hospital visits and the effects of Nick’s epilepsy. It was almost back to normal – we were determined not to be confined by Nick’s illness.
“We couldn’t travel much abroad and a long-haul flight was out of the question due to the risk of crisis and also the cost of travel insurance. Life at home was also much quieter, but we were fortunate to have great and sociable neighbors, so the aperitif in our house became a regular weekend fixture.
“It was so important for us to make the most of the time we spent together – we were determined to create a ‘new normal’ for both of us. “
After his first seizure, Nick quit his job as a project manager for a town hall and took a few classes instead, including graphics, photography, bike maintenance and he also learned web design on his own which has helped leads to paid work.
Diane said: “We both knew it was important to have a passion or a hobby or to discover a new one. Nick’s lessons and the odd jobs that came with it were a big boost for him – he could sit for hours on end in our bright veranda overlooking the garden, splashing around on the computer, working at his own pace and playing. his favorite music in the background. “
It wasn’t until 2018 that Nick’s health unfortunately deteriorated and he suffered a seizure while on a train to visit Diane’s sister in York. They went to A&E at York Hospital where the consultant feared the brain tumor had progressed. Nick was referred for further testing, but the results were inconclusive due to uncertainty as to whether they exhibited regrowth or inflammation, which may be the result of a seizure.
As radiation therapy was no longer an option due to his significant risks, Nick had another course of chemotherapy which was his only treatment option. Unfortunately, this was once again a failure.
Yet in October 2019, they learned the news they dreaded – Nick’s low-grade tumor was now aggressive, high-grade, and his prognosis was terminal – although Diane and Nick were unwilling to put in any treatment. deadline on this. He had two more rounds of chemotherapy that continued for an hour each month in January and February, before it became clear that they also failed, so the treatment was stopped.
As the global pandemic unfolded, Diane cared for Nick at home as he gradually lost the use of his arms, legs and speech, developed incontinence and lost the ability to swallow.
Around the allowed Covid restrictions, Diane’s sister Carol traveled from York to help and support during the five weeks that sadly led to Nick’s death in September. His last few days were tough, Diane said, as he gradually waned over time, but his physical strength kept him going for as long as possible.
The lockdown had a huge impact on their experience as Covid meant all medical services were suspended or overburdened and, if they needed it, palliative care was not an option. Nick also developed many other ailments including DVT, a lung infection and shingles during the pandemic, but he overcame them, largely due to his age and general fitness. The tumor also caused her a psychotic episode, and Diane had to call an ambulance for help.
Diane said: “Mostly, I just needed a hug. But there was no one who could do that. I have no family in the area so I was often alone with a terminally ill husband. It was a long and difficult journey after Nick’s diagnosis.
“I was alone, sad and angry and I continue to be – grief is not linear – it is rambling and chaotic – so some days are better than others. Some days I feel normal and have fun, but other days a huge weight pulls me back into a hole of grief.
“Nick was my soul mate. From the first moment we met in class to study journalism and creative writing, I knew he was “the right one” – my heart leapt when I saw him. He was smart, kind, funny, good looking and athletic – he was everything to me.
“I have had several months to reflect on our personal journey – my message is simple even if the diagnosis is not – you can live with a brain tumor and not let it rule your life. A brain tumor diagnosis is brutal and scary, but you can still live your life. We are all wonderfully unique and people with the same diagnosis can end up with very different prognoses.
“So grab life with both hands, find friends, family and support groups to help you live your ‘new’ life and follow your passions or create new ones. We were doing.”
Diane first heard about The Brain Tumor Charity on social media and shared her story as a cathartic way to help her with the loss of Nick.
She added: “It is clear that more research and better treatment options are desperately needed for people who have been diagnosed with brain tumors. Nick only had one option – radiation therapy – and once that was given and the tumor started to grow again, his time was ultimately limited. “