• Clare Campbell-Cooper's husband was diagnosed with a brain tumour aged 26; he died aged 39

  • Here she shares the impact of caring for someone you love, and grieving them before they go

  • We have specialist bereavement counsellors available here

In a way I consider myself to be part of an incredibly fortunate minority. Those people who have been given the opportunity to understand how incredibly precious life – and the ability to live life to the full – is. My husband David was diagnosed with a brain tumour at 26, he died when he was 39. 

I was also lucky that, by the time David died in May 2021, the man that I had married in 2007 had changed beyond recognition. He was no longer my husband, my soulmate, my partner. He was more like my child. Someone I loved greatly, and who loved me in return, but someone I needed to protect, to defend. By the time David died, we both recognised that it was time for him to leave us. He had kept his spirit, his will to live, for over twelve years, but it was time to let his soul rest. For him to be at peace. 

And knowing that made his loss bearable. 

It sounds like I coped with the idea of David’s cancer well, almost easily. But twelve years is a long time to come to terms with death. Twelve years is a long time to watch the person that you love changing in front of your eyes. The slow, insidious creep of destruction. Destruction of his abilities, both physical and mental. Destruction of all hope. When death finally becomes a release. 

I started to grieve for David the year after his first diagnosis. I had just given birth to our only child and we had left him, George, with my parents in Devon so that David and I could travel to London for the operation that would remove as much brain tumour as possible, a craniotomy. Post-operative histology showed his low-grade glioma was, in fact, a high-grade astrocytoma and David needed to start radiotherapy when we got home. 

My grieving for David was never as bitter, raw, or real as those few months after we got back from London. I was grieving for the man that I married, the man that was changing in front of my eyes. I was devastated that my husband was being taken away from me and was slowly deteriorating. Our conversations lost their spark; we no longer really laughed together, we were friends, not lovers and I was his carer, not his companion. It didn’t mean I loved him less, just differently. And if I had known of the changes would I have argued against surgery? Would I have been happier to live in ignorance? Would we have opted for radiotherapy? Who knows. But I do know now that I would give anything now to have had the benefit of hindsight because I would have laughed louder, have loved more, and seized every opportunity when we had the chance.

My head office was in Slough and I used to travel to the office every few months, a journey of about three hours. In those three hours I would cry, big gulping sobs. I would cry until I could cry no more. I would hit the steering wheel, shout and swear. It was the only time that I really let myself go. Then, before I reached the office, I would park, patch up my makeup, brush my hair, and draw back behind the curtain of my life. If people saw me cry then it would validate the appalling things that were happening to us. I didn’t want anyone’s pity, so I hid behind a façade of black humour and keeping busy. 

Every milestone of decline in David was another period of grief, as a loss of David’s life, George’s life, and our lives together. I once heard someone mention that their tumour was attached to many more people than just themselves and that was so true. After David died I realised there is no timeframe for grief, no pattern to follow. But the death of David’s brain tumour gave me life again. I bought new clothes, I smiled at the sun, I didn’t drink wine (a first for me!), and I exercised again.

I have been irreversibly changed; the reality of repeated trauma and nearly thirteen years of caring is going to leave lasting scars. I think I was naive to think it wouldn’t. I have cried those hot, bitter tears that have scalded my cheeks. I am angry at the injustice of such a wonderful, kind man being taken. I just wish he was here. He loved life. He was happy. He was innocent. But over the last three years I have learned to be gentle with myself, to find happiness again. 

The Japanese have an art called kintsugi, mending broken pottery with gold, making a stronger and more beautiful pot than the original. I have been repaired by kintsugi. I have realised that it I can live again. I have faith in God and in myself, my fundamental ability to choose love, to choose faith, to choose light. 

To float.

Clare Campbell-Cooper’s book Choosing to Float is out now. Clare will be giving at least 10% of her net royalties to Brain Tumour Research.

Further reading

The heartache of grief: Why loss is one of the hardest challenges we can face

How EMDR can help in cases of complex grief

How to navigate hard conversations after a terminal diagnosis

Overcoming grief through meditation and self-compassion