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Family share how they are coping with dad’s incurable brain tumour.

A family has shared how they are preparing themselves, including their teenage children, for losing their father after he was diagnosed with an incurable brain tumour.

Stephen Daniels, 42, from Swindon was diagnosed with a glioblastoma brain tumour last year. The diagnosis followed a massive seizure which left the dad-of-two with a dislocated shoulder and a nasty wound on his tongue after he had bitten through it.

After being rushed to hospital, scans initially came back clear or pointed towards possible scar tissue which doctors said may have been present since birth. At that stage, Stephen was diagnosed with Epilepsy and given medication to control any further seizures.

But his symptoms worsened over the next couple of months. He had excruciating headaches, fatigue, poor concentration and regular phantom smell of cigarette smoke. His usual happy and confident persona also changed and his mental health deteriorated to a point where he couldn’t cope with his everyday routine any more.

Stephen had to take time off his job as a Group Marketing Manager and his uncharacteristic symptoms also had a detrimental impact on his otherwise happy marriage of 14 years to Kate.

Stephen said: “The seizure came out of nowhere. I had some mild symptoms, like a changing sense of smell, but I had also recently had Covid so I put it down to that. After the scans, the doctor actually told me that I didn’t have a brain tumour but I was worried about the impact of Epilepsy, especially as I couldn’t drive which changed how I could look after my two girls.

“My mood would change so quickly too which I had no control over. All of a sudden, I was no good at the things which I was previously confident that I could do well – I just couldn’t be who I wanted to be anymore.”

Stephen had another scan a few weeks later with contrast dye. This time a tumour was found on his left parietal lobe, which was around the size of a 50p piece, so he was scheduled in for surgery the following month.

Stephen said: “I got off the phone to the neurology team, called Kate and I told her to brace herself as I didn’t have good news. We were, of course, devastated. It felt like such an odd experience – like it wasn’t really happening to us. Suddenly, it was like I was a passenger in my own life with basically no control of what was to happen.”

Stephen and Kate knew that a big hurdle which now lay ahead of them was breaking the news to their two daughters Grace, 12, and 14-year-old Sophie. They knew their dad wasn’t well as they had seen the first seizure happen. Yet, Stephen said that telling his girls about the brain tumour was the most difficult thing he has ever had to do.

He said that he also felt ill-informed about what the diagnosis meant for him and his family which is why he looked online for information and found out about The Brain Tumour Charity. It was on the Charity’s website that Stephen found out that his tumour was the cause of his recent memory problems.

Stephen explained: “When we sat down to tell our children about my diagnosis, we felt that we didn’t know enough to be able to answer all of their questions. We wanted to be open and honest with them so we told them everything we knew at the time and we have continued to maintain an open dialogue. But we simply don’t have all of the answers – no one does. All we know is that this tumour is incurable.

“After using The Brain Tumour Charity’s website. I have found out a lot more about the disease in general and how this could apply to my situation, which really helped. But there’s so much misinformation out there about my tumour and my situation – that’s why I am sharing my story to try and help people to understand the reality a little more.”

Kate said that providing their children with the most accurate information about their dad’s diagnosis was of primary importance as she didn’t want them to search online and be worried or scared of the information which they could find.

She added: “For us, it was really important that the girls weren’t misinformed or overheard anything without having the full picture. There also isn’t empathy in a search engine result so we knew we also needed to hold onto compassion and love in the face of what we were all going through.

“At every step or with any new bit of information, Stephen and I wrapped our heads around it, digested it and then the next people we told were the kids.

“We have tried to keep as calm and proportionate as possible. Our eldest girl had been really angry with us for trying to shield her from the scale of Covid so we paid attention to that. We knew that if we discussed everything with her then our youngest couldn’t be excluded from that – she deserves to know the truth too. Full disclosure had to be our policy.”

The following month after his diagnosis, Stephen had surgery which successfully removed all of the tumour which was confirmed to be a glioblastoma. This is a particularly aggressive and fast-growing tumour type which typically comes with a prognosis of around 12-18 months. Stephen was told that he had just a 50% change of living through the first year after his diagnosis.

Stephen found out on The Brain Tumour Charity’s website how there has been little change to treatment options for his type of brain tumour over the last 20 years. This is due to poor funding and limited research, especially when compared to other cancer types.

Stephen said: “There has been a distinct lack of clarity around what my treatment options are. I have an appointment with the neurology team once a month and, although they are fantastic, there’s just not enough to answer and address all the questions and concerns I have. I do have a CNS, who has been brilliant at ironing out any bumps with forms to fill in or treatment questions. But the bigger questions, such as can or should I work, how much stress could I tolerate now and will my ability to communicate improve, often went unanswered.

“Ultimately, I know that I will die and that my family will carry on without me. I know that I will miss watching my kids grow up. But I try to remember that this is happening to them too so we aim to be there for each other and make the most of what we have.”

A follow-up scan after the surgery found that, although all the tumour had been removed, chemotherapy was unlikely to prevent regrowth. So Stephen also had radiotherapy alongside a current course of oral chemotherapy which ends in July.

Stephen and Kate have praised the support which they have received from their employers and the various charities they have been in touch with. They have both had counselling and the family have been supported by the Ruth Strauss Foundation, which specialises in helping families who are facing the loss of a parent. But Kate says that there is still a lack of resources or people outside of their immediate family who bring together experience in both grief and adolescence.

Kate said: “At home, we try to provide a space each day to talk about what is happening in everyone’s life – sometimes this is tumour focused and sometimes it isn’t. Having a time for coffee and contemplation after school each day has given us a regular and natural time for us all to catch up.

“But there is still a lack of people outside of ourselves who are willing to speak openly with the girls – we joke about the all-too-frequent sympathetic head tilt. A lot of the information and advice out there seems geared towards young children rather than the young people our girls are so they look at what we can provide out of politeness rather than any real use.”

Despite the trauma the family are living through, they remain optimistic about the future and what precious time they do have together, even in the midst of the uncertainty surrounding it. Stephen’s latest scan in March came back clear which shows the treatment has been successful so far. However, as the tumour is incurable, it is likely to grow back in the future. But to celebrate this milestone in Stephen’s treatment, the family went on a walking holiday in the Brecon Beacons to spend some quality time together.

Kate has also been finding her own ways to cope with the situation and come to terms with how she will lose her husband to this awful disease.

She said: “Ahead of the brain tumour diagnosis, it was a real challenge handling Stephen’s mood swings and the medication he was now taking. I was increasingly worried that this new Stephen didn’t feel like my husband and it just wasn’t getting any better. The idea that it could have been something else, like cancer, happening just never crossed my mind.

“But that phone call changed everything. The fact that the tumour is incurable and that it is treatment resistant is the ultimate diagnosis – it clicked that we were working to a finite timeframe and not to an eventual recovery.

“At the beginning, it easier for me to lose myself in work and to prioritise that over my family. I have addressed that now but I do still find myself zoning out and not being present as I can’t help but let my mind wander. I had a bad bout of not sleeping and having panic attacks but the clinical psychologists I have seen have given me the tools and time to help with that too.

“Misinformation is a huge problem – people have asked me whether the brain tumour is because of the Covid vaccine or because Stephen was using his mobile phone too much. We find ourselves as educators, explainers and justifiers of treatment options along with everything else we have had to deal with so it’s been tough. I have always been a fairly placid person but I didn’t realise just how angry I could get until this happened – I could be lost in a blind rage and utterly powerless to do anything about it.

“Covid made all of our lives a lot smaller but life didn’t expand again for us when the restrictions eased as everything we do needs to be risk assessed. Talking really does help – I have found that people are far kinder than I thought and that it has often come from unexpected places too. Just people asking how things are has meant far more than I thought was ever possible.

“There is also a lot more love in our family than I ever knew was there, or perhaps I took it for granted. But I know now that Stephen loves the bones of all of us. In a way, we’re also lucky to get the heads-up that we don’t have the luxury of time or good health anymore. We are just enjoying what we have now rather than looking to the future too much.”

Kate’s advice to others who find themselves handling a terminal diagnosis of a family member is:

  • The whole experience is rollercoaster – surgery and treatment will batter you. Try and come up for air and don’t try to second guess the future.
  • Find good relatives and friends, even people who you may not expect to have turned to, and share the highs and lows with them. No one has to do this alone.
  • Telling your kids what’s happening in an open and constructive way isn’t the same as dumping all your worries on them. So don’t be scared of conversation.
  • If you don’t know how to start a difficult conversation, start with “I wonder…..” and then just say what’s on your mind.

The Brain Tumour Charity offers help, information and advice to anyone of all ages who is affected by a diagnosis. Visit here for more information.