Help us change the future of Palliative Care

[Katekat]

Have you or your loved ones had an experience with palliative care in the last five years?

Throughout the month of April, Cancer Council NSW is asking people to 'Call-in' and share their story with us. By sharing your experiences of advanced and terminal cancer, you will help us to change the future of palliative care in NSW.

The information provided will help paint a picture of the amazing difference that palliative care staff make to people’s lives, as well as the impact of gaps in access to palliative care. It will also help inform and enhance support and information resources available to the community.

What do you do?

Simply call 13 11 20 between the hours 9am - 5pm, Monday to Friday. There will be extended hours on Thursdays from 8am - 6pm.

If you're not comfortable sharing your experience over the phone with one of our trained health professionals, you can do so online here: www.cancercouncil.com.au/palliativecare

Everyone has a story, please ensure yours is heard 

[ClareSmart]

I have a story of palliative care - my husband dying with brain cancer at home. I havent written it yet but can do soon if that is still helpful. Clare 

[Ridgy]

I hope the palliative care story inspires. This is not about me, though I have been disgnosed with stage 3b neuroendrocine tumours of the small intestine (low grade as well-differentiated). My tumours were cut out 9 months ago and I am receiving no active treatment bar follow-up blood tests every six months and a gallon scan every 12 months. It's called wait and see as they are sure to return! So while I am on the surveillance program (stressful), my sister who has advanced cancer (different to mine) and given 12 to 18 months to live (that was 30 months ago) goes in and out of hospital in the past six weeks with infections (stressful). Three weeks ago she presented to hospital again with a suspected urinary tract infection, which turned to sepsis (at the time shock-jock Alan Jones was in ICU for the same condition). She was given 24 hours to one week to live as the IV antiobiotics were not improving her lot and moved to hospice (not ICU) for end of life (palliative) care. The family prepared for a funeral. A week went by, and she opened her eyes and the hospice doctor said, well I give her a month, she's clearly experiencing a rally. But she kept getting stronger and the family joked again (humour is important in these dire times) that she'll probably walk out of this "end of life" facility. Within 10 days of being given one day to live, she stood up and went for a walk! She is now going to be moved to an aged care facility as she'll need higher care post-sepsis/advanced cancer! The joke in our family is this. Alan Jones goes to ICU to recover, our sibbling goes into palliative care! She is a walking miracle. However, she's now even more susceptible to infection so we don't know how long she will remain a walking miracle. But if you need proof of miracles and the power of palliative care, this story surely is one of them! 

[Katekat]

We definitely love hearing your stories, so please do share yours with us when you have the time @ClareSmart and thank you for sharing yours @Ridgy 

[Ridgy]

Just a sad postscript to my blog about my sister's miracle recovery from sepsis in hospice. A month to the day she was admitted, she passed away. The infection returned to claim her but as I wrote, she woke up and got up and was able to walk (with help) to the chapel to have the service she wanted to honour her life. She was treated beautifully by the hospice pastor who called in on her daily to play her favourite music, which we were given to play at her funeral service. And, on the day she took her last breath, I was by her side, along with the pastor from her care home who had been reading her favourite psalms. She had two pastors who gave her the love and care she needed that month. For that our family are grateful. Rest in peace my dear sister, we miss you already!