Claire’s story, June 2021
Claire is 50 and has worked for the hospice for over two years helping manage some of our Shropshire charity shops. She also works at SAND where she was recently appointed as a director, working across sectors to enhance LGBT+ health and well-being in later life. A few weeks ago Claire came to our Shrewsbury hospice for care.
Claire wants to share her story to let everyone know how important supporting us is.
“I initially went to see the GP in 2019, however it took a year for some of my symptoms to be considered as turning 50 seems to be a catalyst for everything to be menopause related. In January 2021, I was referred for some tests and received my cancer diagnosis in February. When I first heard the word cancer, I never thought about dying, I just thought I had some cysts on my ovaries. Now, some months later, after much medical intervention, I have been diagnosed with a rare, aggressive cancer. When the same medical team started talking about end-of-life care, my entire world, as I knew it, shifted.
“The clock seemed to stop but at the same time, move faster than ever before. You take time for granted and then when you are told you don’t have it, you desperately try to claw it back. And you can’t. I remember being spoken to about palliative care. The question came up about where I wanted to go as I couldn’t go home, and the hospital had done everything it could. Severn Hospice was a no brainer, my first choice. Then I was unsure, I didn’t know if it would be the right place, I questioned if I was old enough – and of course I am. The words hospice and palliative care have such negative and old connotations. I also wondered if I’d leave. But I am. I’m leaving in a few days. Apparently, I’ll be allowed a return ticket if I behave myself – I’m doing my best.
“And that’s why I want to share my story. I want to help the hospice by dispelling misconceptions and telling people about my actual experience of the care, because it is so different to what you expect. I have been blown away by it. I completely underestimated it, even having worked in some of the hospice charity shops in Bridgnorth, Bishop’s Castle, Craven Arms, Ludlow and the Shrewsbury superstore.
“Severn Hospice is great – a home away from home. People who have come to see me have been blown away also. There’s more laughing here than I’ve heard in months. And I can hear the birds too, rather than the beeping of machines, or people coughing. I feel like I’m living in a conservatory, not a hospice. I’ve done a lot of creative projects and my wife and I have explored everywhere in the gardens. Everyone says the gardens are lovely, but you do not appreciate them until you see them. The gardener has even given us cuttings to take home. And everyone here talks to you like you’re normal. In other places they have a special voice, a ‘You poor girl’ voice.
“I don’t feel like a patient. I am recognised as me and not a diagnosis. In hospital you become your diagnosis, you become a terminal illness patient and I’m not that here. I’ve been allowed to be me, with my crazy wife and our quirky ways and Post-It Notes. That’s me, that’s what I do at home.
“The hospice is about family. The staff called us family from day one. They said, ‘It’s about what’s right for you and your family’ and I burst into tears. The fact that Severn Hospice is supporting members of our family means so much; my wife Nicky can access services like massage therapies, and she has access to social workers if needed. Right now, Nicky is having a massage from a Severn Hospice complementary therapist after having coffee in the hospice cafe with a friend. And we love it over in the Refresh Café – it’s a slice of normality. I put my lipstick on to head over there and I’m off out! I’ve been testing out my new wheelchair skills instead of worrying about doing it for the first time in town surrounded by strangers. It’s a slice of cake and a slice of normal life. And it’s so nice to see other people walking around too. There is a sense of community across everything that happens here.
“The hospice has helped me focus on what I needed to enable me to go home. All the hospice staff always have time for you and truly understand you and have that lovely way about providing support that enables you to be yourself. My time here has been about recognising who I am. It’s been about recalibrating. Every single aspect of my life has changed in the last few weeks. I’m going home a very different person to the one who left. I can’t drive now. I can’t walk. I have a terminal illness.
“The hospice staff kept me alive. Not in the sense that I needed medical intervention, but the person at the core of me, the person who will not live according to somebody else’s timeline, that person is alive and fighting.
“Severn Hospice gave me the autonomy to choose what works for me – it’s not what they think, it’s about what I think and feel. Along with their professional guidance, they have been a real advocate for what I want. Because of Severn Hospice, I’m now confident about what I can achieve, more confident knowing what support is there for me. So I’m going home but the adjusted version is going home. I’m still mentally strong and argumentative and still want to make sure that I’m doing my bit to make the world a better place. I’m going home and I’m not going anywhere but there. My time at Severn Hospice has allowed me to have the confidence to say what I would like to do, to express my values and outline what matters to me in relation to my ongoing support needs. I feel buoyed by this group of people, and they’re not going away. Severn Hospice is here for me now.
“All our donations will go to the hospice. Every time we donate anything we will think of a member of staff and their face and know it’s for them. The community benefits from this service a lot more than it knows and needs to know it is a service that’s truly unique and is there to support anyone when they need it. It is for them and their friends and family. I would urge people to support the hospice. The work is on your doorstep, it’s local and you can see the difference that is made first-hand. Where do you want your time and money to go? The gift of your time is so precious. And there are so many ways you could help; you could volunteer in the shops, in the gardens, or you could donate items, or money.
“I want to say thank you for the way I have been allowed to be myself at Severn Hospice.”
Severn Hospice is delighted that SAND is generously volunteering time to train hospice staff and volunteers in LGBT+ rights.