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Palliative care: 'I felt that if I brought the nurse into my life, I was really dying'

I are currently working on memory books. I’m going to leave these for my children containing memories of happy times baking and camping, writes Evelyn Wakefield.

Evelyn Wakefield 36-year-old mom of two

JUNE 26 2014 is a date I’ll never forget. The words “you have cancer” still ring in my ears. The weeks after brought more heart-breaking news as I was diagnosed with metastatic breast cancer, meaning the cancer had travelled and taken up residence in my bones, primarily my spine.

Things just seemed to get worse as I was given the devastating news that I could not be cured and had about two and a half years left to live. At 33 years of age, this was extremely hard to digest. With a husband and two young children, aged nine and three at the time, I not only had to deal with the treatments I was receiving but also the emotional impact that my children may not remember their mother.

I too was facing the fact that I may not see my daughter start primary school or my son make his confirmation and many more milestones they would have.

My quality of life had been affected

My disease has metastised meaning that it has moved from the primary site of the breast to my bones mainly my spine, ribs and sternum. Due to this I suffer from a lot of pain and reduced mobility. In February 2016, my quality of life had been so affected by the level of pain I was suffering that my consultant oncologist in Limerick Regional Hospital suggested getting the palliative care team involved to help manage my pain.

Within two weeks of my oncologist suggesting palliative care, the nurse contacted me and I immediately thought: “I don’t want her to call.” I just didn’t want to see her. I felt that if I brought her into my life, I was really facing death and I wasn’t at all ready for that.

What about my husband and my children? Anyway, I agreed for her to come and we sat down and talked. After the meeting, I felt such relief because she had so many suggestions of how to give me back my quality of life. All I was expecting was, I was going to end up in bed with the nurse with me 24/7 but I quickly realised that’s not what palliative care is.

In a short space of time, I learned that the palliative care team were there to give me the best standard of life that I could possibly have and thankfully, we succeeded.

Trial and error

It took a lot of trial and error to get my mix of drugs right. My palliative care nurse knew what drugs I needed and how well they’d work but every patient is different. I expected her to come in and say “right take this, this and this and then you’re sorted”. But it took a lot of tweaking, about three months to get it right.

But one day I woke up and I had the most normal day I’d had in maybe a year and a half. I felt good in myself that I was able to do the “normal” things. I no longer needed 18 hours in bed, I was able to take my kids to their activities and attend school events.

Recently, the palliative care team have introduced a social worker. The social worker and I are currently working on memory books. I had wanted to do this for such a long time but I had no idea where to start. I’m going to leave these for my children containing memories of happy times of their mother including the simple things in life like baking together, camping in our back garden etc.

There’s something really nice about doing this in your own home and not in a clinical setting. The social worker comes to me when the children are out of the house and there’s no time constraints. She’s such a massive support to me and an invaluable resource. It’s not a quick appointment and out the door, she’ll stay as long as you need her.

I thought the end of my life was fast approaching 

Although the last few years haven’t been easy, I now realise palliative care is much more than what I previously thought. It’s about supporting the person throughout their diagnosis. It’s about pain management while maintaining a quality of life.

I thought the end of my life was fast approaching and that the palliative care team would be there for three or six months and then I’d be gone. But no, it’s much more than that. Although not a normal life for my age, I have a better quality of life and I’m also being supported emotionally through my disease. It’s not just about me – my family are being supported as well.

My friends used to shiver at the thoughts of the palliative care nurse coming to my home but their opinions have totally changed now that they know what palliative care really is. We all have perceptions on different things in life and I’m so glad I opened my ears to listen to the palliative care team that day. It’s been a life changer, for the better.

I am blessed to be here and enjoying my life with my husband, kids and extended family as we continue to create memories and I look forward to many more with my amazing family and friends. I couldn’t have this quality of life I have without my care team and without palliative care.

Evelyn is a 36-year-old mother of two from Birr, Co Offaly. She was diagnosed with breast cancer in June 2014 and started receiving palliative care in February 2016. Palliative Care Week is being facilitated by All Ireland Institute of Hospice and Palliative Care and takes place from the September 3 to 9. For more details see www.thepalliativehub.com

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About the author:

Evelyn Wakefield  / 36-year-old mom of two

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