Steve Farmer was 53 when he and wife Denise found out he had prostate cancer. They went on a massive journey of treatments and often felt they were in a battle to make their voices heard. As Steve became more unwell, Denise took on the role of unpaid carer, which was exhausting emotionally for both of them. According to Essex Carers Support, in Essex there are at least 125,000 people who have caring responsibilities. Denise shares her story...

The St Helena community nurse specialist suggested we go for a stay at the Hospice to get the medication sorted out but there would be a long wait, about ten days to a fortnight. After all we had been through, I didn’t consider that to be long! I thought it sounded brilliant. But by the end of the week they could take him in. It was such a relief. 

I really hadn’t had any sleep for I don’t know how long because he would be up in the night and fall over, I had to wash him and everything. I became his carer and he didn’t like it. He said to me ‘I don’t want my wife to be my carer’. St Helena seemed to work together with other organisations to put in place the allowance, the blue badge, and the district nurses. All of a sudden I had this network and all these people to call on.

It was like this relief came over him; he was just so happy to be there and everyone was absolutely amazing. 

He started to deteriorate and he couldn’t get out of bed without help and couldn’t walk about anymore. The doctor said it was a brain tumour and then it was just gradual decline.

The staff were all so attentive. It was really as peaceful as it could be. The volunteers got to know Steve really well. He used to love a gin and tonic and they always knew what he would have. They were so lovely. Everyone was so good, they almost become like your friends. I would describe everyone there as angels in disguise.

It was a huge relief to go there. I couldn’t cope. In those 12 years he never ever complained. He had his man-bag and would go off and do what he had to do to be comfortable. No one really knew how bad he was because he wanted to be treated like you or me and we made the most of every bit of time we had. We had some lovely holidays and we would go away at weekends. Sometimes he didn’t feel great. People were totally astounded when chemo was mentioned because they just thought he was OK. He didn’t really talk about it because he didn’t really want people feeling sorry for him.

Before we got to the Hospice I really hadn’t had any sleep for I don’t know how long because he would be up in the night and fall over, I had to wash him and everything. I became his carer and he didn’t like it. He said ‘I don’t want my wife to be my carer’.

I know how alone I felt at the time I was Steve’s carer. I didn’t know about anything that was out there; I think there is a lot on offer but I didn’t know about it. If I could have met other people caring for people they love, where I could ask the questions that I couldn’t ask anyone else, it would have been easier. 

I was trying to be strong all the time at home and for my husband but I feel I could have talked to someone who was in the same position as myself. If you talk to other people in the same position, I imagine you can say what you are experiencing yourself and the people will have answers. If someone was there to just guide you and tell you the sort of things you could expect. It isn’t all dreadful; you get odd moments and you take those moments. But then there is a lot of bad as well and it was very hard. If I had spoken to somebody, I feel it would have helped and you can comfort each other. And now, having been through it, I would always be willing to talk to people. Someone to say there are good times and odd moments, and you have to grab those at the time.

At the Hospice, whatever he wanted, nothing was ever too much trouble. They took him for a Jacuzzi bath or got a wheelchair to go outside if he wanted. Steve at first thought it was like a weekend break at a hotel and said ‘are we away for the weekend?’ and when I said ‘no, this is The Hospice’, he said ‘it doesn’t feel like it, does it?’

He totally loved it, loved the food. I don’t know what I would have done without the food. I didn’t want to go home and cook. The kitchen was amazing. My daughter and I ate there for six weeks, they always found us something to eat, they were lovely.

While I was there they sometimes used to whisk me off to do some Reiki or have a massage or do my feet. The complementary therapies were lovely and my daughter had some too. I would try to keep some sort of normality and do some jobs in the morning. When I had some Reiki, I felt totally different. It was lovely, so nice. I think I actually slept that night. 

I saw on the noticeboard at the Hospice about the Saharan trek. I signed up for it and told him I was going to do it. He said ‘good’ so he knew I was doing it and that it was a way to say thank you. He couldn’t really say a lot by then but he said ‘good’.

When I later did the Sahara trek to raise money for St Helena; it was my thank you from Steve and me and by me doing it, it meant I was helping someone else, and someone else before me had done something to fundraise so we got the help we needed. Without people like us, people like Steve will not get the care they need in the future. So for me, that is why I had to do it.

It was my way, and all our friends’ way, to say thank you. I got quite a buzz when someone gave me some money. People would come up to me saying ‘I can’t believe what you are going to be doing; I wish I could give more, but here’s £5’. People I don’t really know. Before I went, my grandchildren asked ‘are you really going to the desert granny, where are you sleeping?’ ‘Under the stars’ I would say, ‘and there will be a camel’. They told everyone at school that their granny was going to walk the Sahara desert!  I think the trip was good for my wellbeing and I think it gave me closure. St Helena touches everyone’s hearts; I think we've all known someone who requires hospice support.  

Going to the Hospice became my life, it became normal. I went every single day and afterwards it was really hard not to go anymore. We felt like we were going to be doing it forever because it seemed normal. I still worried, I was very stressed. I did eat a lot but the weight just fell off me because I was so stressed, but I knew I could go to bed and didn’t have to worry when he was there. When he was at home, I didn’t have any sleep at all, it was awful. I was always worried about what he was going to do. I ended up sleeping on the sofa so I was there if he needed me.  I could sit with him and talk and read to him or put the TV on. I could go there and be Steve’s wife again. 

This story may not be published elsewhere without express permission from St Helena Hospice.