Memory Wall

On 31st December 2015, New Years Eve, our world fell apart.  Nick was diagnosed with a brain tumour but it wasn’t until a few weeks later we realised how serious it was.  Nick had had no symptoms, none of the usual headaches or vomiting, etc. We were Christmas shopping in the Bullring in Birmingham (where we lived at the time), we had stopped for lunch.  Nick picked up his coffee cup and his right hand started to shake. This lasted a few seconds.  I did the stroke test but everything else seemed alright, so we thought no more about it. Nothing else happened until a week later, Nick was on his way to a parent and toddler group that I ran at the time and he was late.  I phone him and he mumbled something.  When he arrived he said his right leg had started shaking and he had to stop the car.  This started to happen more frequently so Nick went to the doctor.  He said it might be a vitamin deficiency and did some blood tests.  They came back fine.  It continued to happen.  On Christmas eve he went back again and this time they said it was muscle cramps and told him to take quinine for 5 weeks.  Over Christmas he started to feel worse and on 28th December ended up in A&E.

They still weren’t taking it very seriously and referred him to the GP at A&E rather than the doctors there.  It was only when they asked him to wiggle his toes and he couldn’t did they take him seriously.  Two consultants thought it was a spinal thing.  When the results from the MRI came back, I think they were as shocked as we were.

Nick was referred to the QE in Birmingham for more tests.  They confirmed it was a brain tumour, they thought it was aggressive and cancerous but until they did a biopsy wouldn’t know for sure. What they did confirm was that it was not operable because of where it sat in the brain, at the part that controlled the motor movements of the body.

Nick’s mobility was getting worse but once he was put on steroids it improved.  On 25th January 2016, Nick walked into the operating theatre and never walked since.  We were expecting to go home the next day but Nick ended up being in hospital for 10 days.  A few days later, we got the news we were dreading, grade 4 Glioblastoma, prognosis 14 months.

We were devastated.  Our life changed in an instance.  Nick was working, walking, driving one day and the next day he wasn’t.  We not only had to cope with the brain tumour, but Nick was now disabled, paralysed down his right side and had to use a wheelchair all the time.  It was horrendous.  It breaks my heart just thinking about it.  We loved walking and sailing and that was all over.

The bit I forgot to say was that in the October before, literally 2 months earlier, Nick had decided to retire from being a full time vicar, (he was older than me), we were going to take the children out of school for the year and go sailing around Europe.  No sooner had we made this decision, it was all taken away from us.  Our hopes and dreams were shattered. That for me was and still is the hardest part.

Nick then went through 6 weeks intense chemotherapy and radiotherapy and then continued to have chemotherapy.  He responded well to it and the tumour shrunk. He continued with the temozolomide for a further 6 months.  From May 2017 to December 2017, Nick was doing well. We went to the British Grand Prix (something he’s always wanted to do), went on a disabled sailing boat for 5 days, and even went on a family holiday to Tenerife to the best wheelchair accessible and disabled hotel ever! It was wonderful.  We tried to do lots of special things together and create special memories. During Nick’s good time I lost my mum to Oesophagus cancer so that was tough.

Things were going well, Nick was not on any treatment for 8 months, until early December 2017 when he had a major seizure lasting 5 hours and a 10 day stay in hospital.  Sadly the tumour had grown back.  Nick started a different chemotherapy drug but sadly it didn’t do anything.

He started to deteriorate, had several chest infections and stays in hospital.  We did manage to go away for his birthday last year (our last holiday together)but after this things got worse. He was moved downstairs and sadly passed away on 5th August 2018. Eliza and Stuart were 15 and 12 at the time.

‘Nick loved life and lived it to the full, right to the end, he was kind and gentle and he was an amazing husband and wonderful Daddy. I know one of the hardest things for him was not being able to see Eliza and Stuart grow up.

In summer 2019 Eliza and Stuart undertook a 14 Days, 14 Climbing Centres Challenge and raised over £7000 for Headcase. Their sole purpose was to help find a cure for this horrible disease so other families don’t have to go through what we have been and continue to go through. Nick would have been so proud of them, and it was a wonderful testament to the man he is.

Thankyou for supporting this amazing charity.

Julie Pelling