Facing a terminal diagnosis

We had just returned from holiday in France knowing something was badly wrong, but never dreaming it was terminal. I remember actually considering the awful possibility of a small eye-related brain tumour – but an operable, curable one.

Once back home Gareth had a CT scan. I knew it was serious as it took twice the time they had told me. After hours and more tests I was taken to a side-room and introduced to a consultant who told me that Gareth – my beautiful intelligent blonde blue-eyed boy – would most likely die within the next few weeks. There was a 5% chance he would survive up to two years; but their experience showed it would be most likely in the next six months.

Nigel was still on his way, so I had to give him the news when he arrived. The worst thing was going back to the ward and looking at Gareth, knowing he was going to die. I wanted to shout, scream and howl but had to hold it together for Gareth and try to process all the information.

We had lots of help during the next seven months. Lifts were arranged for six weeks of radiotherapy, meals were brought and the dog walked. Getting a puppy, as we had promised the children we would after our holiday, was definitely the right thing to do. It gave us all another thing to focus on and later gave Jess a perfect teenage companion.

Gareth was given steroids and radiotherapy to try to slow the tumour’s growth and he showed incredible courage and even humour throughout.

The only thing he complained about was his chubby cheeks! Our skinny boy became heavy and slow, lost clumps of hair and had to wear specs with one frosted lens. His favourite clothes didn’t fit him any more but he usually managed to go to school. His teachers were wonderful, even taking him on a short holiday. He had a good time, but letting him go away was torture for us.

Gareth’s consultant offered us second opinions and an MRI scan, where we realised the extent of the tumour. We decided against chemotherapy as it was very unlikely to give our lovely boy any extra time and would most likely destroy any good time he had left.

We decided to try to keep everything as normal as possible. Jess went to school, Gareth went to school when he felt able, Nigel went to work and I tried to hold it all together. I gave up some voluntary work so probably had more time to think about the situation than Nigel and Jess. I dreaded that moment after waking when the horrible truth dawned again and the new reality sank like a lead stone in my heart and belly – it happened every morning. Trying to keep things normal was a daily struggle before we even got out of bed.

Jess had a really raw deal with dysfunctional parents, a very poorly brother getting all the attention and coping with the onset of teenage-hood all at the same time.

Nigel wishes he had stopped working sooner, but his boss was wonderfully understanding and enabled him to work from home for a few months.

People often said ‘I don’t know how you cope’. And of course you don’t either because you don’t stop to think about it – you just get on with doing the very best you can for your children. But now you have this awful thing hanging over you.

Watching your beloved child suffer and go through treatments knowing they’re going to die is merciless miserable pain. That knowledge was such a strain every day – I didn’t realise how much until long after he died. What surprised me was how much of a shock his death was even though we were expecting it.

Because the position of Gareth’s brain tumour meant it was untreatable, we both knew for sure that our early acceptance of the fact that he would die made the last seven months of his life easier than they might have been otherwise. Had the diagnosis been less definite we may have been tempted to travel world-wide with him to find alternative treatments at a huge emotional cost to the whole family. We believe this grace was God-given and have found we are able to continue trusting in God even after our precious boy died.

We have huge sadness that he didn’t live longer, yet we know his short life was good and happy. We also carry huge sadness that Jess lost so much of her childhood so early.

Eighteen months after Gareth died a friend booked us onto a Bereaved Parent Support Weekend, where we met other bereaved parents on this difficult and strange road. It was a crucial turning point. We realised we were understood and given permission to grieve as we needed – not as family or society expected. We were given tools to help us find our ‘new normal’.

Another bereaved parent said, ‘time itself does not heal – it just allows the space to learn how to cope.’

That has been our experience. We know we will never be the same again, individually or as a couple. Gareth’s death has left its mark but we want that mark to be positive, otherwise it would not be honouring to his memory. We hope we are enriched by the experiences we have been through as a result of his death. We continue to be hugely enriched by the people we have met who are also on this journey.