Summary
With hospices nationwide facing a funding crisis, we are asking for community support this winter so we can keep on caring for patients like Marc. Here, Marc explains how hospice care has supported his wellbeing over the past few years. He also shares his hopes and fears as he approaches the end of his life.
Marc spoke to us recently from his home in Brighton.
Hello. You may remember I shared my story with you a few years ago. To be honest, I didn’t expect to be sharing another blog with you, but thanks to incredible care from the hospice team I’m still here. As part of Southern Hospice Group’s winter campaign, I’m supporting Martlets and St Barnabas House to raise awareness of the crisis hospice care is facing – and what you can do to help. But first, I’d like to share my own experience of palliative care and how life-changing it has been for me and my family.
During the pandemic I was given the devastating news that I had aggressive thyroid cancer. This meant my larynx needed to be removed, and I’d never sing again. At the time, I worked in musical theatre which I loved, and my voice was my money maker.
Following surgery, tests revealed that the cancer had spread to my lungs and bones – at 48 years old my diagnosis was terminal. Hearing this left me numb. We were mid-lockdown, and alone in my flat with my husband Perrie and Gizmo the dog, I ended up in a dark place.
My oncologist referred me to the team at Martlets, who have been by my side ever since. They’ve helped me when I’ve been really sick, showing me how to live with an incurable diagnosis.
Hospice care helped me make the most of the time I have left
Thanks to the hospice, I’ve been able to spend more precious time with the people I love doing the things I enjoy. I remember when I first met Martyn, my hospice nurse. He would visit me at home to help manage my symptoms and he was like a ray of sunshine coming into a dark room. I’d assumed that hospice care was all about end-of-life, but Martyn showed me he was there to help me live and to make the most of the time I had left.
When you have an incurable diagnosis, there comes a point where you no longer want to be treated like a patient anymore because it’s so clinical. The great thing about Martlets is that I’ve always been treated like a human being and there’s a real connection there. Martyn and I would laugh about whatever we’d seen on the TV the night before, and he’d remember the stuff I’m interested in and that made all the difference. My husband could always tell when Martyn had been because my spirits were lifted.
Getting emotional support from the hospice team
That’s the great thing about Martlets – it’s not just there to treat you medically, it’s there to lift you emotionally. Through my counsellor at Martlets, I started to explore doing things that I thought I’d never be well enough to do again. She said, ‘You might not be able to do what you used to do, but are you still able to do part of that in a different way?’ And it was a ‘light bulb moment’ for me. I realised that although I couldn’t perform, maybe I could direct people on stage or work in the wings, which would still give me that connection to the theatre – the thing I love most.
For two years, I’d avoided walking into a theatre because I didn’t know how I was going to feel. I was scared I’d find it too emotional. But then I got the chance to do some voluntary work at the Theatre Royal in Brighton. I remember coming in through the stage door on my first day and walking on to the stage. I felt the warmth of the lights above me and looked out towards the Royal Circle. Instead of feeling upset, I had this feeling of warmth and elation and I felt like I’d come home. And I couldn’t have done that without the help of my counsellor at Martlets.
Marc at home with Gizmo (left). Marc in hospital receiving treatment (right)
Keeping me independent and out of hospital
Six years on from my original diagnosis, my health is declining, but the team at Martlets are still here for me. I can call them and the community team will give me support and advice, and come to see me if I need them.
My cancer is growing again and it’s growing fast. The past few months have been truly awful with pain from my cancer, treatments or infections. I’ve had a sinus infection for eight weeks now – the constant headaches are unbearable. I can no longer do the things I love. Perrie recently treated me to a show at the theatre, but I had to leave early. I was shaking and couldn’t stand to give the incredible performers a well-deserved standing ovation. I spent the next two days in bed.
As we approach the festive season, I desperately want more time with Perrie, but my symptoms are getting worse. I’m getting really frightened and it’s terrible watching the people I love as they prepare for Christmas knowing I’m scared. I have a compromised immune system, so hospital isn’t the best place for me. The hospice does everything they can to keep me safe.
Recently, as part of this campaign, I met Stuart the hospice CEO and shared with him that I’ve started thinking about my future care, as I’m aware end-of-life care on Martlets inpatient ward isn’t guaranteed. Many people want to be cared for at home but others, like me, would prefer to be at the hospice. However, the stark reality is there might not be a hospice bed available when my time comes.
One in four people who need palliative care can’t access it
Not being able to choose scares me as I don’t want to die at home in the bed Perrie and I share. I know that would be traumatic for him and it’s been such a relief to discuss this fear with my nurse and Perrie.
The specialist care at Martlets is amazing – everything is so calm. Patients are treated as individuals and that’s what you want at the end of life. There’s a real sense of community – from the receptionists to the doctors and nurses. Martlets can only provide this essential care thanks to the support of the local community – because there isn’t enough funding from the government. It frightens me to think that without that support we wouldn’t have a hospice – and that doesn’t bear thinking about.
Before my diagnosis I was fit and healthy and I never thought cancer would happen to me. It’s a sobering thought, but one day it might be you or someone you love that needs hospice care and I want Martlets to be here for everyone who needs them.
So please, if you can, consider making a donation to Martlets so the hospice can keep providing its vital care for families, not just for the now but into the future.
With all my love and thanks,
Marc
Donate now so we can keep on caring
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With your support we can keep on caring for families across Brighton and Hove and the surrounding area – families like Marc’s.