I have lived with advanced breast cancer for many years and have been involved with BCNA on their Advanced Breast Cancer Working Party. During this time the group looked at various issues affecting advanced disease and often this would focus on palliative care and the positive benefits of being involved with palliative care.
I did not need their help, I thought, so did nothing about it. Unfortunately last year, my health deteriorated for a period of time and I spent a few days in hospital undergoing some fairly radical radiation. At discharge, the nurse suggested she contact Eastern Palliative Care based in the eastern suburbs of Melbourne. I agreed but was a little apprehensive still. In my mind, palliative care was end of life care. I found out that this is not the only thing they do. Palliative care is for people with chronic illnesses, not necessarily end of life.
I was very impressed with the immediate attention and support offered. They came to my home and sat down with me to discuss where they could help. I was introduced to an Occupational Therapist who came to my home and recommended the installation of some railings at the front step and bathroom railings. At the time, I thought I might as well get them put in now for future use but as soon as they were installed I started using them and now wonder how I managed prior to this. They also got in touch with the local council who now come every two weeks and do some home help for me. I again didn't think I needed it but it has made life so much easier. As I receive the disability pension, these items were supplied at a pensioner rate, so much cheaper than getting in a handyman.
I was also offered visits by a massage therapist, music therapist and biographer. I thought I would give them a go. They all came to my home. I now have a massage every 4 weeks (free of charge). I undertook the biography sessions and now have a lovely memento of my life recorded for my children. I have not given them a copy yet, but the experience was uplifting. When I had finished the biography I was able to look back on a very happy childhood and adulthood which took some of the negativity of the disease away and made me realise that I had had a good life, full of joy. The music therapist came for a while and we did meditation together. All in all, these experiences have been nothing but positive. There was no pressure put on me to participate, but I thought why not?
The palliative care nurses come to visit me every two to three weeks as I am on active treatment at the moment. As I am on my own, I have had the occasional need during the night for some support and they are only a phone call away. This has helped instead of heading for the emergency room in the middle of the night when you have to wait so long. The visits with the nurse also allow me to discuss any small issues with them which sometimes you don't get to with the doctor. Again, they visit me at home. On the couple of occasions that I have used their emergency service, it has taken a lot of anxiety away from my children who are my carers. Just being able for them to talk to the nurse for advice has taken some pressure off them.
Last week, I had a call from the family support nurse just to see how I was and how the girls were coping. One daughter lives at home with me and she is going overseas for a few months. The nurse is visiting me next week to see what else can be done to help during this time. They have a group of volunteers who can take me out shopping or just to get me out of the house for a cup of coffee. My daughter who is going away was so pleased as she was worried about leaving me even though I have encouraged her to go. Knowing that I have an emergency contact at any hour I may need it and have access to such good support is making it easier on her.
After all the years I managed by myself, I regret that I did nothing about being involved with palliative care. It has been one of the wisest and most comforting things I have done; I just wish I had done it earlier.
-- Julie, Vic (Issue 15 of The Inside Story, Spring 2009)
