Day Hospice stopped me feeling isolated

Helen was diagnosed with breast cancer 5 years ago and since January 2020, she started attending the Day Hospice at Florence after initially having some doubts about coming along. Here Helen tells us her story in her own words.

“When I was first referred to the palliative care service in 2014, the specialist nurse offered it as a means of support. I refused at the time because I didn’t feel ready for it and being under 50 I believed (mistakenly) that all the other patients would be much older than I was. In 2019 I asked my palliative care nurse if she thought it would helpful, as I was feeling isolated.

The Hospice has supported me by providing expert physical and psychological support with weekly meetings that enable the staff to promptly review the effect of any interventions they have suggested. It has also provided me the opportunity to meet other patients and to talk openly and safely.
Nothing that I raise is considered trivial and I suspect that there is nothing that the Hospice staff haven’t heard before. If they can’t provide a solution, they will suggest who I should ask and what I might need to ask for. Knowing that their expert advice and care is easily available has given me confidence to live as I want to without too many “what ifs”.

Meeting other patients has made me realise how lonely I was beforehand. I appreciate being able to talk openly about anything without the fear of causing distress to my family and friends. Being able to talk about what might happen as my disease progresses has helped me to be realistic about what I can do on a day-to-day basis, without beating myself up about managing less than I used to.

Meeting other people in the Day Hospice who are in my situation has been amazing. I know that I can undertake some of the craft activities at home (and I do), but doing them with others is a powerful experience. We encourage each other, chat and laugh. Some of our conversations are serious, many aren’t, and we just have fun without having to apologise or explain if we find something difficult because of our medical conditions.

I was initially worried about coming along as I thought everyone would be much older, but the ages in my group have ranged from 40 to 90 so that makes our experiences and perspectives interesting.
The care and support I have received is somehow more structured than I expected but at the same time we’re free to opt out if we don’t feel up to it. It’s clear that a great deal of thought and planning has gone into Day Hospice, making it a truly therapeutic experience and much more than just a get-together.

I’ve been very struck by the commitment of the staff that spends the whole day with us without a break, eating lunch with us and promoting conversation if necessary. One of the nurses will come and chat with us individually each week too, finding out how the week has been and following up anything we’ve raised before. They are amazing.

My consultant, GP and the specialist nurses who deliver my treatment have specific roles relating to the management of my disease. The hospice fills in the gap that promotes quality in my life. If I didn’t have the hospice care, I would either be troubling my GP with symptoms that might feel trivial or would be trying to find a way of living with them on my own. So having hospice care as well as a hospital is very important.

My husband and close friends say that attending the Day Hospice has had a positive effect on my mood – returning after the first lockdown was a high point last year! Until I needed palliative care, I hadn’t realised how much Florence Nightingale Hospice relied on charitable funding. I am incredibly thankful for those who donate and undertake fundraising activities.

The volunteers also contribute so much to the experience. And as I no longer drive, the commitment of Michael, who is a volunteer driver for Florence and takes me there and back, enables me to have a positive experience without having to ask my husband or family to take me for yet another appointment.

Our group talks about food every week because many of us have altered appetite and tastes. One week we were reminiscing about afternoon tea and the staff asked us if we would like this one week instead of lunch. We enthusiastically said yes! And with good cause! The room was decorated with bunting; the staff brought in their own tablecloths and tea sets, and laid out Covid-safe individual teas. It was a thoughtful treat and a really enjoyable experience for us all.”

This article was written in January 2021. Helen died at the Hospice in April 2022.