Thursday, 23 September 2021

My dying wish is for people to give

FOR a man with only a few weeks left to live, Tony Stevens is remarkably serene.

FOR a man with only a few weeks left to live, Tony Stevens is remarkably serene.

The 48-year-old bachelor, from Dunsden Green, was diagnosed with multiple untreatable cancers in the summer and is unlikely to live beyond January.

However, thanks to the care he receives at the Sue Ryder hospice at Nettlebed, Mr Stevens says he can face the inevitable with calmness and dignity.

He is using his final days to raise awareness of its services and encouraging people to donate to its Christmas appeal, which it is running in partnership with the Henley Standard.

The centre at Joyce Grove, a Victorian Gothic manor which was once the family home of James Bond author Sir Ian Fleming, needs £1.7million a year to stay open and must raise almost three-quarters of that in donations.

This works out at about £7,000 a day, which the hospice is aiming to raise so it can care for people on Christmas Day.

Every year Sue Ryder provides a roast dinner, presents and other festive treats for patients and relatives who are staying on December 25.

In the run-up to the occasion, a large tree is erected in its oak- panelled entrance hall and children from local schools visit to sing carols.

Additionally, the charity’s community outreach and telephone support services remain available around the clock for those living at home but struggling.

Mr Stevens, who ran the Jet garage in Reading Road, Henley, for 17 years until it closed last summer, says it is a vital lifeline for people who might otherwise have to cope alone.

He has a form of renal cell cancer that spread to his lungs, bones, lymph nodes, the back of his skull and probably his brain too.

The first symptom was a pain in his back that developed after he lifted a flower tub in his garden in July. He initially thought it was a pulled muscle but the pain kept moving to other areas.

He visited his GP Andrew Burnett at Sonning Common Health Centre and was referred to the haematology department at the Royal Berkshire Hospital in Reading.

Doctors feared the worst from the outset and the devastating news was confirmed following a series of tests in early August.

Mr Stevens was told there was no hope for treatment and he only had six months to live. He then spent four weeks on the ward while palliative care was arranged.

He said: “They took some scans of my back and said straight away that it wasn’t looking good. It was one of those times where they suspect everything but won’t confirm anything until they’re certain.

“Pretty soon they realised there was nothing they could do. They gave me a bit of radiotherapy because I was struggling to walk but they could only shrink the growths a little. Palliative care was the only option.”

His father John, a former mechanic on the Phillimore Estate in Binfield Heath, died aged 67 in 2006 after battling various cancers over almost two decades. His mother Margaret followed less than a year later, again from cancer, at the age of 60. Both were cared for at the Nettlebed hospice and were delighted with their treatment so Mr Stevens agreed to a referral.

An occupational therapist from Sue Ryder assessed him while he was in hospital and once he was discharged he began visiting its weekly wellbeing clinics.

The sessions, held every Tuesday morning, allow people to make use of hospice services such pain management, counselling and complementary therapies as outpatients.

They can also call the centre at any time to arrange home visits or receive emotional support.

Counselling is also available to Mr Stevens’ friends and family, including his sister Teresa Whittall, 46, and full-time carer Liam Boughey, the son of his lifelong friend Debs Boughey, from Binfield Heath.

Mr Boughey, 22, has quit his job as a fencer to live with Mr Stevens. He shares caring duties with his cousin Andrew Huyton, 18, who also lives in the village.

As Mr Stevens’ condition worsens, he is finding it harder to walk and must sometimes be pushed in a wheelchair. He has stayed overnight at the hospice several times for more intensive pain treatment and to give his loved ones some respite.

Whenever he needs to go, he can stay as long as necessary and can even take his bed linen from home. He can receive visitors whenever he likes and they are allowed to stay over.

Mr Stevens said: “As soon as I came out of the Royal Berkshire Hospital, Sue Ryder had everything in place for me. I’d always said I’d be happy to have their help because they were brilliant with Mum and Dad.

“There are so many services here — I’ve had my feet massaged, my toenails trimmed, a manicure, a pedicure, you name it. I’ve had help from a counsellor and so have my friends and family, which is very useful.

“Being able to discuss whatever you like and in total frankness takes much of the pressure off. It’s comforting to know the people I care about are supported because I worry about the impact this has on them. The charity takes good care of everyone who is affected.

“It’s helpful for Liam because it must be hard on him. A carer can’t be on demand 24 hours a day. He has to do everything from ensuring I take my tablets on time to keeping me fed. I’m never alone — either he or Andrew are always there when I’m at home. My pain relief here is amazing. A few weeks ago I couldn’t walk but now I can get up and stroll around the grounds. It’s getting worse all the time but they’re always able to tweak it a bit. They’re actually better than the hospital for that.

“The staff here make everything easy — they all share information and I never have to repeat myself when I talk to someone new. I can walk up to any nurse and talk to them for as long as I need. Even the gardener will come over for a quick chat if we’re outside at the same time.”

Mr Boughey said: “Tony wasn’t happy about me leaving work but I insisted. As far as I was concerned, I didn’t have a choice in the matter.

“I guess I’ve always just got on with it but it is a relief to have Sue Ryder there when things aren’t going well. We know we can always bring him back if he needs it.

“When it’s just us at home, I’m always a little on edge in case there’s an emergency. Every time he goes to the toilet, whatever time of day or night, I’m always listening to make sure he comes out back out again.

“Here, I can have a lie-in until 9am or 10am then spend time doing things with Tony, sometimes until the afternoon or sometimes late into the evening.”

Mr Stevens said: “I felt the same way as Liam when I was caring for Mum — it was like having a weight lifted because you could get a couple of decent nights’ sleep. You’re not tense the whole time.

“The hospice is totally flexible and will take you in for as long as you need. I can come here for a week, go home for a few days then come back again if that’s best for me.”

Mrs Whittall, who lives in East Hagbourne, said: “If I’m having a wobbly moment because I don’t have any family to talk to, I just pop in and someone’s always available. That goes for everyone like the receptionists and cleaners, not just the clinical staff.

“Whoever’s there as you come through the door will always give you time and attention. Everyone greets you with a friendly ‘hello’ and is willing to listen — they are truly incredible and caring people.

“Last night we all had our shoes off and were sitting by the fire in the main hall doing jigsaw puzzles. It was a really lovely evening. Tony loves those jigsaws — the other patients know him as the ‘puzzle man’ and keep wanting to see how near he is to finishing.”

Last month Mr Stevens spent several weeks at the hospice because his pain was so severe that he was unable to sleep. He became so ill that he was seeing things and talking to himself.

He said: “I was in agony. Everything was hurting when I tried to sleep but within four days of coming here they had it under control. I should soon be fit to go home again but it’s comforting to know I can always come here.

“It’s the best place to be when things aren’t great. You can get medication whatever the time of day and it has taken easily 90 per cent of my worries away.

“I’ve got the freedom to walk around whenever I like as long as I’m up to it — because of my condition, they have to do a risk assessment to ensure it’s safe.

“Every patient here loves it. They value their independence and look forward to going home but have no concerns about returning. I’ve never heard anyone say they’re not coming back.

“When I’m at home, I can ring them up and ask for anything. If I asked them to send out a particular member of the team they’d be able to do it.

“A few weeks ago I was struggling with the pain and they not only sent someone immediately but again the day afterwards to make sure everything was all right.”

Mr Stevens, who has lived in the area all his life and used to be a lathe operator at Stuart Turner in Greys Road, Henley, says everyone in the area should contribute to the Christmas appeal.

He hopes to organise a fund-raising quiz at Dunsden village hall, which once housed the village school he attended as a child, before he dies.

He said: “They deserve whatever funds they can get. I was in here when the hospice held its annual fireworks night and although my visitors were allowed a free pass I insisted that they paid.

“If you’re considering donating to a charity around here, this should be it. Every penny is spent on the place and they’ve got the best palliative care doctors and nurses I’ve ever seen.

“Mum’s pain was unbelievable compared with mine but you should have seen how much she improved.

“I recently had terrible back pain and thought my spine was going to collapse but within 24 hours of coming here it was so much better.

“It has only hit home in the past few months how amazing this place really is. I’ve known for many years but it’s very different when you’re the patient.

“They’ve taken care of the day-to-day problems so I’ve been able to arrange my funeral and start clearing out my house. When the time comes I would prefer to die here because it will be easier on everyone else.

“People ask how on earth I cope but if someone says you haven’t got long left, what other choice is there? I think it’s harder for the family than the patient.

“I would have appreciated the choice of fighting the illness but that was never a possibility so there’s no point dwelling on it. I don’t even know if I’d have accepted as it was hard seeing Dad go through treatment so many times.

“Sue Ryder plays a big part in keeping me positive though I’ve never worried much about death. I could walk out of here tomorrow and be hit by a bus on the main road after all. I know I’m not going to get any better but I have to make the most of every day I’ve got left.

“Humour really helps keeps me going. I’ll sometimes have a laugh with the other patients and that’s good for both of us — it helps us see we’re not going through this alone. No matter who else is here, however young or old, we all talk to each other about our conditions.

“If I didn’t already know what this place was like, the idea of coming would have terrified me. Before my parents were treated, I thought hospices were full of people with their hair falling out just lying around moping and waiting to die.

“Now that I know the reality, I’d encourage anyone in my position to have a look. If you get the opportunity to come here, don’t pass it up because this place is so much nicer than a hospital. There aren’t endless, sterile corridors, people rushing around and bells going off all the time.

“It also doesn’t have that harsh, medicated smell. I’d rather be here than in the best-rated hospital in the country.

“It’s a totally different atmosphere and much more relaxed. Hospitals have a routine, set visiting hours and so on but here you can do what you like. I can pop out for a few hours and go to the chip shop.

“I’ve brought my own bed linen because it’s comfortable and familiar and they don’t mind me making a mess of my room. It’s also great that every member of staff knows your name, even if you can’t remember theirs!

“I love the kitchen team too — if there’s something I’d like that’s not on the menu, they’ll still make it as long as I give them a little bit of notice. Sometimes they’ll come up to me during the day and ask what I fancy for dinner. If I’m not sure, they’ll let me think about it and tell them later.

“That human contact is the most important thing. You can see genuine happiness in every patient’s face when they’re talking to the nurses. There’s only so much normality you can have in a condition like mine but you have to enjoy as much as you can get.

“Sue Ryder won’t let you get down about things — they can tell straight away if you’re not in a good mood and will do whatever’s needed to help.

“Sometimes that’s talking and sometimes it’s having a bit of space but they’ll always help you feel better. This place needs money and if everyone in Henley put in a fiver they’d have no trouble hitting that target.

“That’s only the cost of a tin of chocolates or a box of crackers and it would make a huge difference to people like me and my family. People need to know how vital the service is or it won’t get the support it needs.”

• Next week, we will feature some of the staff who work at the Nettlebed hospice and tell you how the money you give is spent.

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