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Feeling in control of my illness

7 October 2018

When Marie found out that her cancer was life-limiting, she didn’t want to go to a hospice. She thought it was a place where people go to die and was frightened. That was, until she met Christine, a clinical nurse specialist at Birmingham St Mary’s Hospice. This Hospice Care Week, read Marie’s story to discover why she ‘Hearts Her Hospice’ and how with Christine’s support, she is now able to focus on living.

When I was diagnosed with pancreatic cancer, I was scared. It came as a real shock and I remember feeling numb when the doctor told me there was nothing more they could do – it was incurable.

I had no idea that I had cancer. I didn’t have any obvious symptoms at first and it was only when I started to lose a lot of weight that I started to worry. Like most people, when I stood on the scales and saw that I had lost a few stone, I was chuffed. But when the numbers started to drop drastically, I knew something wasn’t right.

A few months later, and my doctor suggested I get in touch with Birmingham St Mary’s Hospice. I really didn’t want to go. I had such a negative perception of what a hospice was and believed that it wasn’t for me. I had no idea what modern hospice care was like and the difference it would make to my life.

It was my husband Brian who eventually suggested I give the hospice a chance and I’m so glad I did. Not only do I feel much more in control of my symptoms but I’m now excited about my future. I can’t wait to celebrate my 83rd birthday surrounded by family and loved ones and I’m even thinking about visiting friends in Italy!

I currently receive care and support from the Hospice in the comfort of my own home. Chris – my clinical nurse specialist – visits me every few weeks to see how I’m doing and to find out if there’s anything I need. Her knowledge is invaluable. We’ll often talk about any aches and pains that I’ve got and she’ll advise on the best medicine to take. She always makes sure that I’ve got all the correct medication at home too, which is one less worry for me.

Chris also helps with any practical matters too. I struggle to get up and down the stairs quickly and knew having a downstairs toilet would be useful. Chris is helping to arrange this with me and a team at the Hospice is supporting by making phone calls. I had no idea the Hospice could help with things like this and having that extra bit of support is a big weight off my shoulders.

But it’s not just the medical or practical things that Chris helps with. She’s also someone I can talk to about absolutely everything and anything. She understands that I don’t want the topic of conversation to always be about my illness. We’ll often chat about my family, things I’m concerned about, or things I want to do in the future. It’s so reassuring to have someone I can just talk to – it really does give me peace of mind.

Brian also appreciates Chris’ visits too. It takes some pressure off him, knowing that I’m getting the expert care I need whilst also having someone I can chat to about any queries. It’s been a big relief to both of us and has had such a positive impact in both our lives.

I always look forward to Chris’ visits and feel much more in control and cheerful after she leaves. Without her help and support, I’m really not sure what my state of mind would be like. I am so grateful for her expertise and listening ear and she has definitely given me the confidence to keep on living life to the full.

Thank you Marie for sharing your story with us. Hospice Care Week is a national week of celebration and action, which aims to get people talking about and change perceptions on hospice care.

If you would like to find out more about our Community Palliative Care Team, and how they support our patients both practically and emotionally, please take a look here