"I could go there and be Steve’s wife again"
Before she pulled on her hiking boots to take part in an inspiring adventure in the Sahara desert in February 2018, Denise shared her story…
It’s my way, and all our friends’ way, to say thank you. I get quite a buzz when someone gives me some money. People 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.
I think St Helena touches everyone’s hearts; I think we've all known someone who requires hospice support.
It was 12 years ago in 2005 when Steve was 53 and we found out he had prostate cancer. We went on a massive journey of treatments, and we were often in a battle to make our voices heard and had to stand our ground. It was hard to cope with. It changes your life. You can’t mix with lots of people during treatment; we couldn’t go on a plane or to theatres or cinemas to avoid getting an infection.
We moved to Tiptree during this period thinking we would have quite a bit of time, but while we were on holiday in Derbyshire in October 2016, we realised things weren’t so good. I had to get a walking stick for him and he was very emotional. When we came back we went for a scan which showed some activity again and that it was moving quickly. By January 2017 he was in absolute agony and could barely walk. He had two walking sticks. The cancer had spread to his bones.
"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."
One day he was really bad and I couldn’t cope. He was sweating. I rang the doctor and Steve was sent to hospital where he had a head scan. It had gone to his brain and his liver. And then they put me in touch with St Helena.
I used to make so many phone calls to SinglePoint in the middle of the night and there was always someone there.
Several times they had to send a doctor out. They were really good. They said to me 'we’d better get you some equipment for home'. The occupational therapist came out and did an assessment and then suddenly everything arrived. The Hospice in the Home team came in each week, but if I needed anything in between I could ring SinglePoint and they organised district nurses. From then on I had help coming out of my ears.
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. But all of a sudden he started to deteriorate. He couldn’t get out of bed without help and couldn’t walk about anymore. He started going downhill and the doctor said it was a brain tumour. Then it was just gradual decline.
"When he arrived at The Hospice, I remember he got in bed and sighed."
In those 12 years he never ever complained
The staff were all so attentive. It was really as peaceful as it could be. While I was there they sometimes used to whisk me off to do some Reiki or a massage, or do my feet. 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. The kitchen was amazing. My daughter and I ate there for six weeks, they always found us something to eat, even if we hadn’t had time to write our names down; they were lovely. To be perfectly honest 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 I 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.
When he was in the IPU I saw on the noticeboard 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’.
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?’
"People treated him with such dignity and like we were special people."
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.
I could go there and be Steve’s wife again
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. Going in there 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.
"The Hospice made something totally awful, your worst nightmare, as nice as they possibly could."
I could go there and be Steve’s wife again. I could sit and talk and read to him or put the TV on.
My daughter and I have come back to The Hospice and sat in the chapel and in the garden and we went to the Summer Reflections service there. It was hard; we all had our sunglasses on like a uniform, but nevertheless it was nice.
What I think is so nice, is after Steve died it’s not like ‘bye’. It carries on and you can stay as long as you like. There’s always that place.
“Someone else did something to fundraise so we got the help we needed”
Hence the Sahara trek! I am nervous about it. I think what am I doing? But it’s my thank you from Steve and me and by me doing it, it means I’m helping someone else, and someone else before me has 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 have to do it.
I think the trip will be good for my wellbeing and I think it will give me closure. I’ve put in quite a lot of effort raising as much money as I can, but I don’t want to make it my life. I just want to do what I can now. I do get quite buzzy anytime someone gives me money.
My grandchildren ask ‘are you really going to the desert granny, where are you sleeping?’ ‘Under the stars’ I say, ‘and there will be a camel’. They tell everyone at school that their granny is going to walk the Sahara desert!
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