"Someone rings to ask if I’m feeling well, if I need anything, if my wife is coping"
Paul had been bed-ridden for eight weeks during the heatwave of last summer with severe pain in his back among other distressing symptoms, until an MRI scan showed he had prostate cancer which had spread to his spine. Now when Nichole, a St Helena Community Clinical Nurse Specialist (CNS), visits him and his wife Lindsey in their flat in Clacton, the couple feel they are being listened to and can cope with things together better.
“Nichole is a lovely lady; I wouldn’t be without her,” says Paul. “We look forward to her coming. Having her come round is reassuring without a doubt, otherwise I wouldn’t see anyone medical other than my consultant every four months. If I have any problems, I can ring her up. I had a few problems a couple of weeks back and she gave me some advice over the phone and got in touch with my doctor. Without her I would be stuck.”
Lindsey adds: “It was just so devastating before. He was in pain all that time and we didn’t know where to turn. But now we have Nichole. After the chemo stopped, he was getting a sickness feeling all the time, so we rang Nichole and she managed to sort that out. She’s just what we need; cheerful, bubbly, and has a good giggle with us.”
It’s those giggles with their CNS and the way the couple laughs together in private, that helps them cope with living with an incurable illness.
“We’ve been married five years but been together 23 years,” Paul says proudly. “I came home for lunch one day and Lindsey said ‘I’ve booked it’, and I thought she meant a holiday, but she’d booked the wedding!
“We’re a good team. I wouldn’t be without her. If she wasn’t here now I don’t know where I’d be; she does everything for me. And she’s more than a carer for me, she’s my best friend.
“We try to talk about our situation. And we laugh and joke about it too. We were talking about the music I wanted for my funeral…”
Lindsey laughs: “Nice One Cyril he wants! And I said you can’t have that! And he said, ‘well it’s my funeral’, so I said, well you’re not going to be there are you?”
“… and I just burst out laughing,” continues Paul. “It’s the way she came out with it straight away! We have to laugh. It’s our way of coping. We don’t hide things from each other.
“My emotions are all over the place. I could be watching TV and someone says something which hits a button with me and the tears just flow for no reason. She says ‘don’t do that, you’ll start me off’, and then we’re both there with tears streaming down our faces.”
After the first visit from the Community CNS, Paul and Lindsey felt they understood more about their situation, how to cope, what to expect, and who to call if they were feeling frightened or needed help.
As Paul’s wife, best friend and carer, Lindsey welcomed the extra support from Nichole, especially after her mum sadly died. Lindsey says: “She’s very understanding, and keeps a check on me too, asking how I am feeling about everything. She asked if I need to speak to anybody but I’m ok at the moment.”
St Helena’s nursing team tops up the CNS visits with a phone call once a month to check in. Paul explains: “Someone rings to ask if I’m feeling well, if I need anything, if my wife is coping. They ask if I want them to ring again and I always say yes please.
“Bless her, ever since those eight weeks… in those eight weeks she [Lindsey] had to do literally everything - and she’s still doing it now. She does everything for me and I worry it’s wearing her out. I worry more about her than I do myself. I know what’s happening to me; I worry about what happens to her when I’m gone. That’s what upsets me the most.
“But I’m glad I have the hospice. I feel like they are listening to me. I can say anything to Nichole, anything whatsoever, and I don’t feel embarrassed. Where we’d be without her, I don’t know.
“Nichole persuaded me to go to STEP group at the day centre. I was a bit wary of doing it but she said ‘give it a go and if you don’t like it you don’t have to do it’. I’m not one for these sort of things but I thought I would try and it would give my wife a break.
“After attending the STEP group, I am so pleased I went. The people I met were so friendly and so were the staff and volunteers. I would strongly suggest that anybody in my position should go; we had good fun, helpful advice and it got me out for a few hours once a week.
“People may think how can you laugh at a time like this? Well I say laugh at cancer in the face, because I will NOT let it take my happy go lucky life that easy! So bring it on I will keep on fighting!”
To contact the St Helena Fundraising team, please telephone 01206 931 468 or email firstname.lastname@example.org , Monday to Friday between 9.00am and 5.00pm.
24 hour advice: SinglePoint 01206 890 360
SinglePoint is a 24/7 advice and support helpline which helps to coordinate an individual’s care with the hospice. SinglePoint also works alongside other healthcare services such as GPs, Community Nurses or Specialists.
To contact a patient at The Hospice please find the address and telephone number below. Phone calls can be made to patients at any time of the day or week. You can contact Inpatient Services 24 hours a day, 7 days a week.
The Hospice, Myland Hall, Barncroft Close, Highwoods, Colchester, C04 9JU
Telephone: 01206 845 566
You can contact The Hospice in the Home Team Monday to Friday, between 9.00am and 5.00pm on:
Telephone: 01206 845 566
Tendring community team
Telephone: 01255 221 222
You can contact the Joan Tomkins Centre (Colchester) Monday to Friday between 9.00am and 5.00pm on:
Telephone: 01206 848 163
Fax: 01206 752 245
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If you, or a member of your family has a life-limiting illness and would like to discuss whether St Helena care services can help, you can contact the SinglePoint telephone service 24 hours a day, 7 days a week on 01206 890 360
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If you would like to write to or visit the Lottery team, the address is: Your Hospice Lottery Office Unit 6 The Atrium, Phoenix Square, Wyncolls Road, Colchester CO4 9AS.
Feedback, comments and complaints about St Helena care and support services may be made verbally or in writing to: Director of Care, St Helena, Myland Hall, Barncroft Close, Highwoods, Colchester, CO4 9JU. To speak to a member of our team, call 01206 845 566