Hospice Care is Priceless

Elizabeth Matthews

While Hospice hasn't given me more time, it has given me better quality of the time I have left - which is priceless
Elizabeth is 48 years old, a mother of two and Grandmother of two. She worked as a pre-school teacher before being rocked with the news that she had cancer.

Not long after her family had moved into their new home in Forrest Hill eight years ago, she discovered what looked like a rash or a burn on her breast. After a number of tests and a biopsy, she was given the news that she had breast cancer and under went surgery to remove the cancer that by this time had also spread to her lymph glands. She remained well for over 5 years while taking tamoxyn.

Then she started having pains in her knee and back. After falling at work close to Christmas, she decided she had better go back to her doctors, who referred her to the hospital for a MRI scan. "I knew the news was bad when I received a phone call from my husband on a Saturday morning to say my Doctor was coming to visit" said Elizabeth. The cancer had reappeared, this time in her spine and there was nothing that could be done.

"I spent quite a lot of time at the hospital trying to get my pain under control and one day one of the nurses suggested that I contact Hospice. I knew a bit about Hospice as two of my Uncles had used the Hospice service, but I still thought 'why do I need Hospice at this point'. The nurse must have seen something in my expression as she quickly added 'Don't panic, you're not dead yet, Hospice staff are experts at pain and other symptom management associated with terminal illnesses'. So I contacted Hospice and I'm glad I did."
On their first visit to Elizabeth's home, the Hospice Community Nurse spent time talking to her, finding out when and where the pain was, plus any other symptoms and then went through her medication. A few adjustments to her medication were made and after a few days Elizabeth's pain was brought under control. She was also given some anti nausea medication to take when she needed to. "The lovely nurse also spent time with me to see how I was coping emotionally and how else Hospice could help me. She told me about the Family Support Team and suggested I should give the Day Group programme a go."

Day Group is held each Wednesday and run by an amazing group of Hospice volunteers. It is an opportunity for Hospice patients to have a change of scenery for a few hours, to socialise with others to enjoy, lots of fun activities, to talk and it is rounded off with a lovely lunch.

"I discovered very quickly on my first visit to Day Group that Hospice is not a scary place - in fact I was surprised by how welcoming everyone is made to feel. There were so many cuddles! I was made to feel like part of the 'family'. I was spending a lot of time at home on my own while the family were out at work and university. I really do look forward to going to Day Group - I call it 'my day out'. Some Wednesdays I wake up and think "I'm sore, I'm tired, I could just stay in bed" but as I know my volunteer driver will be coming to pick me up I make myself get out of bed and go. The fantastic thing is that I always come away from Day Group feeling better than when I arrived. I love the weeks when we get pampered with hairdressers, massages, nail painting - but I also really enjoy the activities and entertainment that are lined up for us at Hospice - you never quite know what the day is going to bring!"

Day Group also gives some patients an opportunity to talk with others who understanding what they going through and they find they can help others. "We sometimes find ourselves offering advice when others talk about issues they are having. We sometimes are able to say "try this, it worked for me"

"We also met with a Social Worker from Hospice who helped us work out a budget as I had to give up work, we have had to find a way of living off less income. It was great to be able to work through this with someone and receive some great advice. Even on our tight budget, I still try to support Hospice where I can - which is my retail therapy! I love shopping at the Hospice trading table when I go in for Day Group and I have purchased some lovely gifts through the 'Gifts for Good' fundraiser - they went down a treat at Christmas time!"

Elizabeth is in regular contact with the Community Team. "I receive a call once a week to see how I am going. If I am having a good week we just talk about how I am doing over the phone, but if I'm not doing so well or some test results have come in, we organise for a nurse to come and visit me." With each of their visits, the Community Nurses will sit and talk to Elizabeth about how she is feeling, how the medication is working and discuss any problems that she might be having. "It is usually the same nurse who comes to see me and it is nice to build a repore with her, it is so much more comforting."
The Hospice Physio has shown has shown Elizabeth and her husband a taping technique that helps with the flow of fluid through her body. Occasionally she has needed to phone Hospice after hours to seek help when something isn't quite right. "It's good to know they are always just a phone call away".

"Hospice has been such a huge help. If they say they're going to do something, they do. For other things they will either find out or send us in the right direction. It is so reassuring to know they are there if and when I need them. Hospice staff treat you as an individual and always make time to talk. It is a very personal relationship"

Elizabeth is reassured to know that the family have access to counsellors, should they find they need them. "My family are currently coping on their own, but I know it is going to get tougher and knowing there will be support for them means there is one less thing to worry so much about."

Elizabeth is taking everything in her stride. "The cancer is continuing to spread and is now in my bones, making them very brittle. I now go to the hospital to have aredia, which I liken to a 'vitamin shot' to try and strengthen my bones and I have the option of another round of chemotherapy to slow the cancer down - but it is something I need to think about, as I know it will make me feel very sick, but it might give me more time with my family"
"We have a full house with our son, his wife and their two beautiful children and my daughter. Both my children are completing their University degrees. I love having my family about and while for much of my kids teenage years I was unable to play with them as most mothers do, due to my pain, I am blessed to have had time with my grandchildren - holding them, singing and reading to them and having them in my life. My husband has been such an amazing rock. I am lucky to have such a wonderful family who are pulling together. Especially as time goes on I find I can't do as much as I use to - it doesn't take much to tire me out and I am finding I need to rest a lot more. The pain always returns, but with the constant visits and medication tweaks by the Hospice team to pull me back up - it is an ongoing battle".

"I am finding that I can't walk far now a days - less than 100mtrs can leave me in a lot of pain and I find I can no longer use the stairs at home. I am taking each day as it comes. I know that if it gets too much I also have the option of the Hospice In Patient Unit."

"What would it have been like without Hospice ... well I certainly wouldn't be having the quality of life that I have - I don't know how we would have coped. While Hospice hasn't given me more time, it has given me better quality of the time I have left - which is priceless"

Sadly Elizabeth lost her battle with cancer at the end of April. She remained so incredibly positive right until the very end. Our thoughts are with Elizabeth's family, who know that we at Hospice will continue to be here for them should they need us.