Bluebell Walk - Clare's story

James, aged 27, has recently been referred to the hospice and his mother Clare has decided to take part in the Bluebell Walk to raise money for the hospice. Clare wanted to share her family’s story:

My son James started to feel unwell two years ago.  The doctor thought there was something wrong with his stomach because he kept being sick.  He also had chronic headaches which were getting worse and worse. 

On Christmas Day, James said he couldn’t see properly. The doctor still thought it was his stomach but a few days later we took James to A&E because he was so unwell. That’s when we found out he had brain cancer.   

He has two tumours which are inoperable and incurable. He’s 27 years’ old. You don’t expect this to happen to a healthy young man. It’s every parent’s worst nightmare.   

James has had an initial chat with Micky Hill, from the Hospice Community Team. My husband and I were there too.  The meeting was held at the hospice because James wants to keep everything to do with the illness away from our home for as long as possible. He says that our house is his safe zone.   

Straightaway I could tell that James felt at ease with Micky.  The meeting was very informal and not at all medical. Micky was wearing ordinary clothes - not a uniform of any kind.  He’s just a really nice chap.  He gave James a gentle introduction into how the hospice team can help him now and in future – and what support is available to his family.   

James came away from that meeting feeling reassured and relieved.  He didn’t feel scared or overwhelmed and I think he could see that that hospice is a lovely, kind, caring and warm place to be. And I know that if there are any problems whatsoever, I can ring the hospice and know that we’ll be listened to.   

I’m taking part in the Bluebell Walk to raise money for Heart of Kent Hospice. My son James has brain cancer and I want to show my gratitude to the hospice team for everything they are doing for him and for us as a family. They are giving us peace of mind and the utter trust that they’ll look after our boy.

Clare

At the moment James is stable and having chemo. The tumours haven’t shrunk, but they haven’t grown either. But it’s such an emotional rollercoaster. We don’t know from one day to the next what’s going to happen. 

James just wants to have normality for as long as possible. He says he has life to live still, so he just gets on with things. Sometimes I look at him and I can see how tired he is. But he keeps pushing himself. He is amazing - truly amazing.  

For James, it’s all about family and being at home. He’s a stepdaddy to a five-year old and he walks him to school every day with his fiancée. The little boy thinks James is the best thing ever! He’s his best friend. We’ve heard about the Family Days which the hospice runs to support families who have young children, and it’s good to know about them.   

James doesn’t want anyone to know what type of cancer he has. He doesn’t really want to know about it himself. Like his dad, he’s not one for joining groups or sharing his feelings with other people.  

As his mother, I’m the one who wants to know everything. I’ve done all the research on the disease and James gave me permission to meet privately with his oncology team.   

The hospice has arranged for me to see one of their Counsellors and I’m so grateful for that and for how quickly they put it in place. I’m kind of tough on the outside, but inside, I’m in pieces.   

When the time comes, James says, “I don’t want to die in hospital – I want to die at home with you and Dad”. And I agree. I couldn’t think of anything worse than him being in a sterile hospital environment, where it’s crowded with people and there’s all the clattering of noise. I need it to be peaceful for him.