Updated: Mar 16
Ry represents Carers at the Improving Cancer Journey Launch
We partnered with MacMillan and Powys County Council in the formative stages of the Improving Cancer Journey. Lessons from Scotland had indicated that raising awareness for the support need for Carers looking after someone with cancer was a vital learning point. As such, we were fortunate to be able to support the launch of this project in Powys and raise awareness of caring with cancer.
Ry has used her voice to help improve the journey for those who care with cancer. Ry had supported her husband through his terminal diagnosis of cancer. She remains determined to shed light on this often taboo subject with the hope that her voice, experience and learnings may support other Carers in a similar role. During the launch, Ry provided her insights into caring with cancer:
What is important for people to understand about Carers when they are ‘treating and supporting’ people with cancer?
How stressful, challenging and draining it is physically and mentally. Carers are walking on glass, quietly advocating when necessary but mostly watching from the side lines, keeping the show on the road – transport to appointments, meals and shopping, calmly running the home and liaising with medical profession making sure all necessary treatment/medication is available and also planning pleasant distractions when appropriate. Desperately trying to say and do the right thing for the person you are caring for. My family observed that I had no capacity to do anything else – I was totally focussed on Paul and his needs – I felt very protective of him. I knew because of his terminal diagnosis that he should only pursue treatment that did not destroy his quality of life in the short time he had left. He just had radiotherapy.
Was there anything that you or someone did to make yours and your husbands experience better?
My five children and their partners started a WhatsApp group that I was not part of – and they discussed everything that was going on there away from me which I appreciated. Usually one or more of them came along to medical appointments and would update the group – so I didn’t have to do any of that.
Our MacMillan nurse Sally Hilton provided Paul with a source of straight talking which he really appreciated – he always looked forward to her visits.
I contacted all Paul’s friends and told them what was happening to him. During treatment I encouraged him to do a little quirky email newsletter update to them all – to which he got loads of replies which he absolutely loved!
Ry shared her journey in an interview. You can see the full interview here:
A List of Carer support groups on Facebook
Whilst my husband was ill with cancer I was pretty desperate to connect with other carers in my position – particularly those looking after terminal patients. On Facebook I found groups where I could get inside information and learn of what was to come. Carers posted about their daily experiences, information about treatment and drugs and their side effects and discussed their daily challenges. Lots, like me, were looking after their lifetime partner and commenting on the changes in their relationship that cancer had brought. It was tremendously useful and reassuring to know that others out there were going through the same challenges. Their posts were tremendously moving and at a time when you don’t have much ‘spare time’ I could just check in with them and read their experiences and ask questions.
I am 74 so not that social media savvy but there are probably many more ways to connect with other Carers on the internet.
Apologies if any of these are non-UK – but sometimes they can still be interesting…
There are lots of local, town and county support groups but here are some I found that Carers might find useful.
Lung Cancer Caregivers Support Group
Pancreatic Cancer Caregivers Support
Brain Tumour Charity Carers Support Group
GMB (or any type of brain cancer) Caregiver’s Support Group
Metastatic Breast Cancer Support Group
Cancer Caregiver Warriors
Oesophageal Cancer and Caregivers UK
Cancer Caregivers Support Group UK
Small Cell Lung Cancer Caregivers and family Support Group
Small Cell Lung Cancer Caregivers Support Community
ICare: A Cancer caregivers Support Group
Cervical Cancer for Family Friends and Caregivers
Cancer and chemo support for Patients and Carers
Breast Cancer Family, Friends and Caregivers Support Group
Support for Family and Friends of Cancer Patients
Prostate Cancer Caregivers – Prostrate Cancer Foundation
Terminal Cancer (SUPPORT GRUP FOR FAMILY MEMBERS ONLY)
Marie Curie – Julie Skelton
Many more groups for specific cancers and Carers
The Bracken Trust – Cancer Support from Llandrindod Wells and Brecon
Marie Curie – Local Project Worker Julie Skelton https://www.facebook.com/Julieskeltonwk
Taking Care: Video Library for Carers
Dementia and Alzheimer’s Carers’ Support Group
ASD/Adhd Parent Carer Support Group
There will be other specific groups
General Carers’ Groups on Facebook
Credu Connecting Carers in Powys
Unpaid Carers Support Group UK
Carers Unite Carers Support Group
Support Group for Carers
Parent and Carers Support Group
Caregivers Support Group
End of Life Care and Bereavement
Young Caregivers Community Support Group