Steve’s Story

“People are frightened when they hear the word ‘hospice’. But the difference St Clare has made to me is unbelievable. It was the best day’s work my cancer nurse has ever done – referring me to St Clare! Whenever I see that nurse I thank her for sending me to St Clare.”

“I was first diagnosed with throat cancer back in 2010. They treated it with laser, and they thought that would sort it out. I carried on having laser treatment and monthly check ups, but it kept coming back.”

“Then in 2012 I started having a terrible pain in my back. The GP thought I had a trapped nerve or a trapped muscle in my back, but in the end they did some tests. That was on a Thursday. On the Monday morning they rang me and told me that I had prostate cancer. They said it was stage 4 and had already left my lymph nodes and had got into my bones. They said there’s nothing we can do.”

“I put the phone down and went for a walk. It was like I was nowhere. I thought, ‘what am I going to do? What am I going to tell my daughters? How long have I got?’”

“I went for an appointment at the hospital and they told me I had six to nine months to live.”

“Meanwhile, my throat cancer suddenly came back with a vengeance and in December 2012 I had to have a major operation to remove my entire voice box and the cancer in my throat. I was in hospital for six weeks, in intensive care for four weeks. I died once when I was in there, and they had to bring me back. I remember one of the nurses saying ‘it wasn’t your time’.”

“Sometimes you can wish your time away. But when you haven’t got a long time, you live for every day.”

“They told me in 2012 that I only had a matter of months left… and that was nearly six years ago now.”

“It was my Macmillan nurse at the hospital in London who suggested that she put me in contact with St Clare Hospice. I was going through a bit of a bad time, after the major throat operation, and she thought I could benefit from coming to St Clare.”

“When my cancer nurse suggested that I come to a hospice I thought ‘Oh my god, a hospice!’ But that was over 5 years ago now – and I have been coming to St Clare’s ever since!”

“I first came along and met one of the nurses in the Day Therapy team, called Claire. She signed me up for a Day Therapy group on a Wednesday.”

“The first time I came through the doors I thought ‘what have I let myself in for?’ But as soon as I sat down with the others and introduced myself, it felt like a big pressure was lifted off my brain.”

“After the first week, I wasn’t going to come back again. But I got myself together and came. By the time it got to the third session I was looking forward to it. I couldn’t wait for the next Wednesday. At first I didn’t say much in the group, I would sit and listen to the other lads speak. Then, gradually, you start opening up.”

“Each week you open up a bit more. Until you reach the point where you can say all the things you need to say. But you can also have a laugh. We have a lot of laughs as well.”

“The Day Therapy groups help you mentally, and with your emotions. I have sat there crying sometimes, and because I’m a man, and they’re all men, I didn’t feel I needed to hide it. I can talk to people here, at St Clare, easier than I can talk to my family. Like about my funeral, and what I want to happen when I am eventually dying.”

“When you need to show your emotions, you can show them. Once you start speaking about your problems, everyone opens up. We all realise that we are in the same boat.”

People don’t understand it, especially my family. I live on borrowed time. Each month when I have my blood test at the chemo clinic, I find out if I am ok until the next month. One month, becomes two, becomes three. Before you know it, a year has gone by.”

“The time I have at St Clare, helps to sort me out. There is always a sense of calm. It is sort of relaxing.”

“Coming to Day Therapy really changes you as a person. Everyone who comes to the group changes when they come here. You realise you are not the only one who is terminally ill – and you change as people.”

“Everyone that comes to St Clare says the same thing. They didn’t know what to expect at a hospice. Then when they get into it, and we all have a bit of a laugh and a joke, as well as our serious moments – they realise it’s great. They keep coming back, again and again.”

“A hospice is for the living; it is not for the dead. They are for the living!”

“People think if you go to a hospice you are just going to get worse, and things will just be downhill from here. But that’s not true. You get better! And a lot of it is psychological as well. You’ve got to have someone to sort your head! Put your head on the right way round. Sometimes your head is on back to front. You’ve got to keep picking yourself up, and carrying on.”

“I have had so much support from St Clare. They will help you with anything along the way.”

“The Outpatient team have helped me to get all the equipment I need to live in my own home. They helped to have my bathroom changed, and to get me a recliner chair. They just gave me so much help – things to make my life easier.”

“The social workers even helped me with financial matters and managed to get my welfare benefits sorted. I hadn’t been getting my payments for a whole year. When I showed it to the social worker, Michele, she got it sorted and I had all my payments backdated for a year. I wouldn’t have known without their help – not with all the forms I would have had to deal with.”

“In June 2017 I had to go in to hospital for another operation on my neck, and when I came out I couldn’t eat or drink properly. St Clare sent their Hospice at Home team around to my house every day to support me. They came to care for me in my home until I was back on my feet.”

“When I had a bad turn in 2015, I ended up coming in to St Clare to stay on the Inpatient Unit. My wife came and stayed with me as well, and they treated us like we were in a little hotel! The team on the unit pulled me round, got me straight again, and I got better. I think a lot of it is about the mental support as well.”

“Mentally, I was going down – and St Clare lifted me back up.”

“At first, my daughters didn’t understand why I would want to go to a hospice. Then when they came to see me on the Inpatient Unit, they changed their minds. Once they came in and saw the place, and they saw how I was treated, they changed their minds.”

“People are frightened when they hear the word ‘hospice’. But the difference St Clare has made to me is unbelievable. It was the best day’s work my cancer nurse has ever done – referring me to St Clare! Whenever I see that nurse I thank her for sending me to St Clare.”

“I also come to St Clare on a Monday to the exercise group and it has helped me so much. Since January 2018 when the class first started, I have improved so much. Vanessa the physiotherapist, who runs the exercise group, has been absolutely brilliant.”

“When I first came to the exercise group I could only do 2mins on the exercise bike, and now I can do 20mins. I’m a lot fitter and stronger than I was, and I have put on more muscle.”

“Since joining the exercise group I have practically abandoned my mobility scooter and do much more walking and just use a stick. I know I will need the scooter later on, but not yet. I’ve got my two legs, and my two arms, and I’m not giving up yet!”

“One of the best groups I come to is called Café Clare and it takes place every Friday. I love coming to Café Clare, and seeing the boys that I have met in the Day Therapy groups.”

“It was at Café Clare, when we were all sitting round talking, that I told them that I was going to be getting married soon.”

“I met my partner Josephine back in 2001 in Buckhurst Hill – and we have been together ever since. Josephine is originally from the Philippines and it took us many years to secure her a divorce so that we could get married. The paperwork finally came through last year, and so we decided to organise the wedding for October 2018.”

“I am well known for my different dress sense, and wearing my hats and things, so at Café Clare the guys were asking what I would be wearing for my wedding. People were expecting me to wear something impressive, and a bit different.”

“I turned to Hugh, who I have been friends with for a few years through Day Therapy, and said ‘Have you got a kilt I could borrow?’ and Hugh said ‘Yes’ straight away!”

“Hugh brought the kilt in for me to try on, and it really looked the business! When I showed the others, they all said it looked amazing.”

“I never told my Missus what I was going to wear, so on the morning of the wedding I was trying to get ready in another room so she didn’t see what I was wearing. Then, when I was ready and came out in the kilt, she said ‘Wow! I feel like I’m marrying Prince Charles!’”

“Josephine and I were married on 4th October in Nazeing Congregational Church – where they haven’t had a wedding for over 14 years!”

“When I walked into the church on the wedding day in the kilt, everyone went ‘Wow!’ I had kept it secret from everyone – they knew I was going to wear something different, but they didn’t know what.”

“Thanks to Hugh, it all went off well! Hugh’s wife even said that the kilt looked better on me that it does on him, so that was a big compliment!”

“I enjoyed the whole wedding day, it all went down very well. We didn’t invite many people – just my two daughters and the grandkids – but then half the congregation of the church turned up! We had a little reception buffet back in the hall at the sheltered accommodation where I live, and about fifty people turned up to that as well – it just took off! It was lovely weather and so we all sat outside in the gardens. The whole day was blinding!”

“I’ve been coming to St Clare for 5 years now, and during that time I’ve been up, I’ve been down, but this place always seems to pull me back round again. I couldn’t live without this place.”

“The impression people have of a hospice, is that you go in there for a couple of weeks, and sit around until you die – and get taken out the back door. But that’s not been my experience at all.”

“St Clare has been unbelievable for me. If just one person reads my story, and is persuaded to come here, then that’s great. I want more people to realise what a hospice is by reading this.”

“If people would only come up to the hospice, come to Café Clare and speak to some of the other patients, they would realise they are not the only one who is ill. We are all ill – but we are having a laugh and joke. We are all taking it with a pinch of salt. You’ve got to come through the door first, and then you will change.

– Steve

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