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Wife praises CNS who provided ‘invaluable support’ following husband’s diagnosis.

A wife who lost her husband two years after his brain tumour diagnosis has praised their Clinical Nurse Specialist for providing invaluable help throughout the family’s ordeal.

Christine Judge lost her husband Ian, 57, when he passed away peacefully at home at 4am on 6 February. He had been diagnosed with a glioblastoma in early 2020 after having a seizure when he was at home with his family. This came after having a series of migraines which had previously been put down to stress.

Ian had surgery which removed 95% of the tumour. This was followed by six weeks of chemotherapy and radiotherapy which finished on 18th March – just days before the first lockdown was imposed. Without treatment, Ian was given just six months to live. Yet, he had an invaluable two more years with his family including their five children Kathryn and Ben who are both 29, Suzanne, 28, Dom, 27, and Callum who is 23-years-old.

During that time, Christine cared for Ian at home with support from district nurses and the palliative care team, especially as Ian’s needs developed. Christine has praised the Clinical Nurse Specialist they had, who was also called Ian, as totally invaluable as he understood and empathised with the complexities which come with a brain tumour diagnosis.

“Our CNS was such a massive source of comfort. Nothing was ever a stupid question and we could talk in confidence about whatever was on my mind. He really was amazing – I couldn’t fault him. We had a great rapport and he was incredibly supportive and understanding of just what a brain tumour diagnosis means. Ian the CNS knew we couldn’t predict what was going to happen and he always kept that in mind.”

Christine.

The family were put in touch with a CNS when Ian was first diagnosed with the tumour. They had an initial telephone consultation followed by monthly appointments in person when Ian went to hospital for his regular blood tests alongside ongoing chemotherapy. This meant that Ian, the CNS, could directly observe Ian’s ongoing condition to assess any changes.

Closer to the end when Ian’s treatment stopped, many people would ask Christine for updates and information on how he was doing. She found this difficult so Ian the CNS stepped in to field all the enquiries which gave Christine the time and space she needed to care for Ian and look after her own wellbeing too.

Christine added: “I honestly don’t know what we would have done without our CNS to turn to – we were able to message him whenever we needed to. I knew that I had to be Ian’s voice and so, if there was anything wrong, I would always speak up about it. It would have been horrible for us not to have someone to turn to with the questions and concerns which we would inevitably have in that situation.”

Following Ian’s diagnosis, the family made a decision for him to be treated at home. This meant staying away from the hospitals as much as possible throughout the pandemic and also so that Ian could have the benefit of his home comforts around him. In the latter stages, the family would enjoy listening to music together and Ian would often sit and enjoy the familiar view from the lounge window.

They could also turn to their son, Dom, who is an Emergency Medical Technician for the East Midlands Ambulance Service, when they needed to. The family credit his quick actions with saving Ian’s life when he had his first seizure at home in 2019 and he stopped breathing. Dom gave CPR and kept his dad stable whilst they waited for the paramedics to arrive.

In the last few months of Ian’s life, his condition worsened quickly. He went through periods when he was unable to speak, he often couldn’t find the right words to say and his mobility also decreased due to weakness down the right hand side of his body.

She said: “We were lucky to get two more years with Ian – a lot of people only get a few weeks or months. The nuances of my Ian were still there until the very end. He was soon able to only speak in short sentences – he would know what he wanted to say but he wasn’t able to get the words out. He did find this very frustrating – but in his usual funny way he would just blow a raspberry instead. He never once complained or said ‘why me?’ and would try to make light of his situation to help the rest of us.”

Ian’s treatment had to stop when blood tests showed that his body was too weak to have any more chemotherapy. Christine and Ian were then able to make plans for what was to come, including his funeral. They chose songs including Belinda Carlisle’s ‘Leave a Light On For Me’ and ‘I Feel Like Buddy Holly’ by Alvin Stardust which evokes memories from when the couple first met. All of the children were to be pallbearers and Dom would play ‘Hold Up A Light’ by Take That on the drums.

In December, walkers and commodes were brought to the family home and, between Christmas and New Year, they also had a hospital bed brought into the lounge as Ian could no longer use the stairs. They soon had carers staying at the house four nights a week too to monitor Ian’s condition around the clock. The family count themselves as very fortunate to have been able to continue to look after Ian at home and for that to have been unaffected by the ongoing pandemic.

In the early hours of 6th February, a carer woke Christine to say that Ian’s breathing had changed. They went downstairs to where he was resting to find that he had passed away peacefully. Christine called the family to the house and they had an impromptu shot of tequila to toast the man they all loved.

Christine said: “It was all so peaceful – we had all reached a place of weird acceptance and unexpected calm. We knew that Ian was no longer going through such an ordeal. We knew what was to come when Ian’s treatment stopped so we just took one day at a time and held on to positivity whenever we could.

“It made such a massive difference for Ian to be at home right until the end – I had been apprehensive about it at first but my worries were unfounded. Ian passing away at 4am would have been manic otherwise but instead it was just peace and quiet in our familiar surroundings where we could all reflect together.

“The funeral itself was as perfect as such an occasion can be. All Ian’s plans were actioned. As everyone was walking into the church, several people commented on the noisy robin sitting just outside. They do say that robins appear when loved ones are near. We think that it was Ian telling us to just get on with it!”

Ian’s personality will always be remembered by his loved ones including his sense of humour, his passion and emotion as well as his opinionated nature.

Christine added: “We always keep Ian in mind and ask “What would Dad do?” whenever life throws us a problem to overcome. He was always the one we all went to for help and advice.

“Brain tumours are brutal – they take away the person long before they die so you watch someone you know and love disappear before your eyes. Ian was still my Ian for such a long time but he changed so much. I want to do all that I can to help others and to find a cure for this terrible disease which left a hole in our family. That’s why I am supporting The Brain Tumour Charity which do wonderful things to support families like our own and strive to stop brain tumours taking so many special people away from us.”

Christine previously shared her story to provide an insight into how life had changed following Ian’s diagnosis. Read “He is still my Ian” here.