A Year of Running: Sixty 4 Judy Begins on 2nd December 2018

Running became a lifesaver for me. In February 2017 my wife, Judith Hughes, was diagnosed with glioblastoma multiforme. A terminal brain tumour. She’d been sat, as she often had been recently, in the lounge doing some cross-stitch when she screamed. Judith had been a bit under-the-weather of late, but this was entirely out-of-the-blue. She had a sudden and severe headache, and then started vomiting. I didn’t have time to think and got her to the doctor’s surgery. He sent us quickly on an emergency admission to the Sheffield Hallamshire Hospital. We headed straight there, despite Judith wanting to go home for a shower and a sandwich. A few tests and some worrying hours later we sat together in a room down a long, quiet and empty corridor. A nervous-looking consultant joined us and told us the bad news. They believed it was a tumour, that it was inoperable and terminal. Fifty per cent of people with Judith’s diagnosis didn’t make it beyond one year.

I have no idea how we got through those first few hours and days. I know I was very emotional. Judith – to no-one’s surprise – was pretty stoic and understated. Her only reaction (you’ll excuse the language in the circumstances) was: “Well that’s a bit of a pisser.” She was 59 years old, a beautiful, intelligent and funny woman in her prime, looking forward to travelling in her retirement, and watching her grandchildren grow up. We went back home that night. Her one request was that I look after her at home. I wanted that too and from that moment forward that became my sole mission.

Everything changed very quickly. Our lives became a series of appointments and procedures. There was never any good news. Judith had a biopsy to check the diagnosis. Confirmed. She started on steroids to control the swelling. Then embarked on a long programme of combined chemotherapy and radiotherapy. I took charge of everything and the list of medications she needed grew longer and more complex. I became a very well-known face at the pharmacy. We plunged headlong into an adventure neither of us wanted. Worse than all this was the dawning realisation that Judith was changing rapidly. On top of the headaches, I began to notice that she struggled making any choices or decisions, even simple ones. She was getting confused and sometimes hallucinating. One morning she was annoyed with Nicola, her daughter, and myself for moving the house to Colorado without telling her. We couldn’t convince her she was still looking out the window over the rooftops of Sheffield. Then she started to wobble. Her balance was off. Soon, I needed to be with her all the time to keep her safe. I started to notice every small change in her. Still we went to appointments. No-one seemed surprised when I told them what was happening. I kept feeding her, tried to keep her moving as best I could and also ensure her comfort. What else can you do? Inside I was screaming for everything to stop, even for a short while, so we could take a breather or just enjoy a few moments of normality. But this disease isn’t like that. It’s cruel, relentless and progressive. Always advancing.

Every day brought new challenges and I learnt to take it one day at a time, hour by hour. Judith could now barely walk unaided and I physically supported her as we did our one move up or down stairs each day. She loved to be in her ‘nest’ on the sofa, propped up in a collection of cushions I would carefully arrange. Equipment started to arrive. Judith now needed a wheelchair, then a bedrail, then something else. I pushed her to and from her hospital appointments and we’d go through the Botanical Gardens, which she adored. The steroids were changing her face and body. She was getting heavier and less able. Physios visited to help keep her moving to some degree. Judith quite liked her visitors and was usually cooperative, though she now had difficulty following instructions and I had to read her eyes to interpret what she wanted. She’d stopped reading, something she loved, a while ago and we kept each other company watching TV or gently chatting. It was loving and intimate, but she wasn’t the same. She was so tired.
I’d started injecting Judith twice a day to prevent thrombosis, trying to make it as painless and comfortable as possible. She still had two spells in hospital. It was such a battle. As soon as you adjusted to one problem and shored things up as best you could, another thing went wrong. I was physically, emotionally and mentally exhausted. My one respite was going for a run. If Judith was comfortable or asleep, as she increasingly was, I would throw my kit on and head out the door, running through the local parks and onto the wooded trails. It calmed me down, restored some perspective and gave me time to think. My head was a jumble. I couldn’t think ahead at all; but running was the best, and the only, therapy I had.

Judith’s family visited regularly. Friends too. Her adult children, Nicola and Tom, were of great help and support. God knows what they were going through. They had their own families to look after. We tried to help each other, but the situation was also very isolating. I tried not to think too much about what was coming down the track. We’d got to the point were Judith was very ill. She was no longer mobile and our life became the four walls of the bedroom and a short supported trip to the bathroom. I had to lift her off the toilet as all her strength had gone. More equipment came, so I could wheel her to the bathroom and back. I became adept at lifting and moving her, but it took every ounce of strength I had. Then things got worse. Eventually I conceded the need for nursing assistance, as it became physically impossible for one person to do everything whilst ensuring Judith was safe, comfortable and properly cared for. It was all too apparent we were reaching the end of the road.

Judith rallied once more and enjoyed her 60th birthday on 6th December. We had a little party and many friends called. She was quiet and watchful. We slept at night in the same room and I’d lie awake listening to her heavy breathing and the rhythmic pulse of the oxygen machine. Sleep was a blessing, but rarely came. Judith died with me at her bedside on 15th December 2017, eleven months after that first fateful day. She bore her illness with the same courage, fortitude, humour and intelligence that she’d shown throughout her happy life. It was a privilege to share it all with her.

As for me, I’m trying to adapt and recover. I’m learning about the impact of grief and trauma. I’ve kept running. Harder and longer. It helps me feel alive. One day, out on the trails in Porter Brook I had this idea. As a family we’ve all struggled in the months following Judith’s death. We’re like planets without our Sun to orbit. I wanted to do something positive for us all. Something that could bring us together, offer us a new focus and challenge, and help us look both forward and outward. Running gave me an answer. Sixty runs to give thanks for Judith’s 60 years. So, as a family we’re going to spend the next year on the run. Nicola, Judith’s daughter, doesn’t run, but has started the Couch to 5k programme in preparation. Her husband, Alistair, has pledged to again having last been a runner at school. Ella, aged 11, plays football and hopes to run with her team-mates and her brother James, aged 8, has just started cross-country at school. Tom, Judith’s son, has joined Valley Striders in Leeds and his wife, Samana, has pledged to run too. Maya and Asher, their young children, are keen to join in, particularly if they can dress up. We hope some of our friends will join us as special guests.

We’ve pledged to run 60 events over the next year in Judith’s memory – starting on her birthday – and in support of five charities that are close to our hearts. These are St Luke’s Hospice, Weston Park Hospital, Cavendish Cancer Care, Brain Tumour Research And Support, and The Good Grief Trust. We know they do some great work and we want to help by raising funds through our running. I hope you’ll support us and them by donating.

You can find a schedule of our upcoming runs on the Events page.
Thanks for your interest. We’ll keep you updated on our progress.

Simon Hughes