Many people think hospices are places where you go to die, but as the experience of Manor Street patient Sylvie Prouse shows, The Hospice of St Francis is very much a place where you go to live.
The Hospice’s Spring Centre is a free health and well-being hub, helping patients, families and carers affected by a life-limiting illness to live their precious lives well.
Here, 63-year-old mother and grandmother Sylvie, who’s been living with secondary breast cancer since 2017, shares her story...
“When I was first diagnosed with breast cancer in 2005, it was a shock, but after successful surgery, chemo and radiotherapy I forgot about it – until 2017 when it came back in my spine and pelvis.
It was quite a blow and initially, thinking I had months to live, my husband and I set about sorting our wills and finances.
I started radiotherapy again to try to shrink the cancer. It helped alleviate the pain in my bones and I was referred by a Luton and Dunstable Hospital nurse to The Hospice of St Francis, which I knew from having helpful physio there in 2006 after my primary breast cancer treatment.
I was having trouble walking because my hips hurt. My back pain made it hard to keep mobile and I was anxious not to become over-reliant on pain-killers but I wondered if the pain was ever going to go away, how strong my bones were and what movement would be safe to do.
When I met Caroline in the Hospice’s community nursing team, she listened to all my worries and questions, gave me explanations and answers and helped me to explore other holistic ways of managing my symptoms.
Initially she referred me for weekly 1:1 physiotherapy in the Hospice gym where I’d follow a programme of exercises, light weights and stretches and do a session on the cycling machine.
The specialist physiotherapists were always very encouraging and knowledgeable and I found the sessions really beneficial for getting things moving again and building up my flexibility and fitness – to the point where I could join the Balance and Strength class to do gentle exercises but in a group.
For psychological support, Caroline referred me for Cognitive Behavioural Therapy with Julie, one of the Hospice’s Clinical Nurse Specialists.
Julie’s helped me enormously, enabling me to change my perspective, be positive and make things achievable.
She’s given me advice on pain relief, helped me to set targets and goals and worry less – because as Julie says, we can spend a lot of time worrying about things that might not happen but what’s the use of that?
I’d often wake up in the middle of the night or first thing in the morning and my mind would be racing but at Julie’s suggestion I did a six-week Mindfulness course, which taught me different ways to relax as well as useful breathing techniques to help me to focus and regain control.
I do struggle with fatigue, sleep and low energy levels, but I signed up for the Hospice’s SMILE course (Self-Management, Independent Living, Everyday), which helped me with strategies to address my symptoms, feel more in control, reduce the things that deplete me (being with negative people, worrying, not having a plan for my day) and increase the things that nourish me (reading a good book, visiting somewhere interesting, getting things done in the house, fresh air, sleep, tea with friends).
I come to the monthly Open Art Studio when I can, always doing something different and inspiring. I’ve tried Knit and Natter sessions and joined the Art Bag and Life Stories Projects. I’ve even tried Virtual Reality, visiting the Northern Lights!
I also found the Hospice’s six-week HOPE (Help Overcoming Problems Effectively) course fantastic for providing a supportive environment to share concerns with others and give me more confidence to deal with emotional issues.
The 12 of us in the group really gelled and were able to share our hopes and fears honestly. Each week, we'd set ourselves individual cooking or creative challenges, which stretched us but were also fun and uplifting.
I come to the Hospice knowing I will be greeted with a smile, the offer of a hot drink and be accepted for how I am at that moment.
All the activities I’ve tried have been great for my body, soul and spirit. I’m free to talk about my Christian faith, as others are free to talk about their faith or none and I’ve discovered it’s not a place of death but of life and encouragement, helping me to live as well as possible for as long as possible for my two-year-old granddaughter and our three grandchildren due in December.
There are no expectations of us – just encouragement to get the most out of this day and whatever we are doing. I feel very blessed to have The Hospice of St Francis so close to my home.”
If you or someone you know needs support, ask your GP for a referral, fill in the Hospice’s online self-referral form at stfrancis.org.uk/selfrefer or call 01442 869550 for a confidential chat with one of the Spring Centre team to find out more
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