My name is Patricia Stack and I have been living with metastatic colorectal cancer since Feb 2021 – exactly 3 years ago – I am not battling cancer or fighting cancer, do you lose a battle with heart disease?

For the first 18 months after diagnosis, I relied on UK ad US resources and patients to help me understand my cancer as I found no Irish support groups - none for colorectal cancer, none for someone my age and with metastatic cancer.

A chance conversation introduced me to the Positive Living Group run by the Marie Keating Foundation and facilitated brilliantly by the Director of Nursing, Helen.

By joining the group, I feel like a found “my tribe”.   A group of people who are also living with the uncertainty that advanced cancer brings.  Advanced, or metastatic, cancer is where the cancer has spread from the original site (e.g. bowel) to other parts of the body.  This makes the disease more difficult to cure and so we live 2 parallel lives “Hoping for the Best, planning for the Worst" – not my words but a book I read recently, and I think it sums up how many of us live with advanced cancer.

I found a group of people who could get it, understand all the things we lose in our life and the uncertainty.  Even small things – should I buy that dress – how many times will I wear it?  Just buy it!!

We can have conversations that we might find difficult with friends and family, especially talking about preparing for “the worst”.  We laugh and cry about our situations.

This group also inspired me to try and do something about the lack of support for Colorectal Cancer patients.  I met amazing advocates in this group.

I didn’t know how to get out there and do that but this group gave me the confidence to get in touch with other patients, specifically Niamh Conroy, and the Irish Colorectal Cancer Community we created work with the Marie Keating Foundation raising awareness and we ran the first Colorectal Cancer patient seminar in Ireland in 2023 and joined forces on the first #NoRegrets campaign highlighting the rise in early onset colorectal cancer.

I have now completed all treatments – they have failed me; I did not fail or lose a battle. Being part of this group has prepared me for where I am now.  I had proactively engaged with my community palliative care team for when this time came, so I knew my nurse, how my care outside of hospital would be managed and what to expect in this stage.  If I was to rely on my hospital medical team to manage this I would probably still be waiting for the referral, I had 2 referrals to the Hospital Palliative care team, but no one contacted me.  In the Positive Living group, we talk about this stage in our cancer lives, how you can get ghosted by your medical teams and therefore how best to prepare for when this time comes.

To finish, I want to call out the needs of patients with metastatic cancer, especially younger patients who may have young families, older parents – our children are too young to support us and often our parents too old.  If we are lucky enough to have partners, the load on them can be large.

I want to urge people to listen to their body, advocate for their own health and be persistent when it comes to getting checked and referred on when necessary.

I want to urge the government to reduce the screening age to 50.