Every carer of someone who has been living with a debilitating illness will have a different story to tell. We would like to hear from carers.
Caring for someone with mesothelioma brings with it a whole medley of emotions.
Jo’s Story
Delighted to say that we have now published ‘Jo’s Story/ Stori Jo’ as part of our ‘Future Generations ‘ Project. We are keen to come and meet with groups and individuals across South and West Wales to share the story, subject to funds being available. You can help our project by making a donation online at LocalGiving
Jo is taking the opportunity to share her story of caring for her father who had mesothelioma. Although people may feel alone, the message is you are not and that help is available.
A Daughter’s Journey – ‘Lasagne’: Shock, Disbelief and Denial
Jo’s Journey – The Mirror: Depression, Anger and Bargaining
Jo’s Journey – ‘Daddy’s’ Sauce: Acceptance
Jo’s Journey – The Biscuit: Grace
Cameron’s Story
Hope (and a safety net)
The 5 Year Plan:
My wife Heather and I had a 5-year plan to prepare ourselves and our home before starting a family. Our plan included everything we could think of to be as prepared to be parents as possible. In August 2005, Heather gave birth to our first and only child, our daughter Lily. We looked forward to our new lives as parents and the holidays.
Three months later, just a few days before Thanksgiving, my wife was diagnosed with malignant pleural mesothelioma and given 15 months to live. For the first time in my life, I would become a caregiver for someone that I loved, someone with cancer. Trepidation set in, and I was nervous about my new role. Once a time of great excitement and joy, the holidays came upon us and the reality of the diagnosis sank in. Our lives rapidly fell into disarray.
After Diagnosis Anger:
The months that ensued were complete madness. I found myself stuck on anger. I kept rechecking my 5-year plan, looking for “prepare for wife’s cancer diagnosis” … it wasn’t there, and I wasn’t prepared. It took some time before I learned how to deal with my anger. Two realizations helped me. First, I had a fantastic support network – a safety net. I had friends and family who would always be there for me. And secondly, I started to apply my scientific mind to becoming a better caregiver.
Learning:
I got smart and learned how to be a better caregiver. I learned how to better communicate, what I had control and influence over, and how to cope. I learned how to organize, prioritize, and be flexible. I started to listen and learn from other caregivers. The skills and wisdom I learned are usually what I blog about. But what about hope?
Hope?
With all the skills I learned, I often forget that I never lost hope. Hope that tomorrow would be better than today. Hope that I could learn to be a better caregiver. Hope that I could deal with my anger. If I would have lost hope, I’m sure things would have been very different.
The five years that followed Heather’s diagnosis were a blur. Heather had surgery, chemotherapy and radiation. It was months of treatments. I learned to be a better caregiver, changed jobs and went back to school full time while working full time. It was hard! But I never lost hope.
Hope is what made it all possible. Hope that tomorrow will be better than today. Hope that somehow you’ll get through it. Hope that one day there will be a global ban on asbestos. Hope that there will be advances in the treatment of mesothelioma and eventually a cure.
Hope is powerful, never give it up. (A safety net helps too.)
Cameron Von St James
June 2016
Find me on my blog and on Twitter!
As a carer you may be entitled to help please ask for a carers assessment through the local authority social services department. If you are living within Pembrokeshire, Ceredigion or Carmarthenshire. then you may be entitled to register on the ‘Investors in Carers Programme’ with your General Practitioner. Further information can be found from Carers UK