Name: Kath
Neuroendocrine Cancer Primary Site: Small Bowel
Centre of Excellence: The Christie Manchester
Diagnosed: 2015
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Kath’s Story
Living with Long-Term Uncertainty
The longer we can live with neuroendocrine cancer, the more resilient we need to become.
‘Resilient’ … what a great word, but what does it really mean? According to the Oxford English Dictionary:
The capacity to withstand or to recover quickly from difficulties; toughness
My favourite description though is from the American Psychological Association:
Resilience is the process and outcome of successfully adapting to difficult or challenging life experiences, especially through mental, emotional and internal demands.
The Diagnosis That Changed Everything
I think it would be fair to say that everyday life comes with a level of uncertainty – and a need for resilience. However, on 22nd June 2015 at the age of 53, life changed completely. Hearing the “C” word I think is one of life’s biggest fears. When it is attached to a cancer no one seems to have heard of, it adds a whole new level of complexity. I had been ill for a long time off and on. I was relieved to get a diagnosis, but not this…
Looking back over the last ten years, I can honestly say that I am glad to still be here. Having cancer still sucks, but that is the norm for me now; and for so many others out there. We just get on and live with the reality of it and the challenges it presents us with.
A Lack of Long-Term Support
Unfortunately, for long-term cancer patients who cannot be cured, there does not appear to be a proper support structure in place outside of charities like Neuroendocrine Cancer UK and personal support groups. HCPs (Health Care Professionals) deal well with the medical and personal aspects of care, but these seem to be mainly focused on supporting patients through a harrowing set of treatments and getting them well again, which is vital. But so is the long-term holistic management of patients who cannot be cured.
Let’s face it, it’s hard living with a disease that seems to have a mind of its own. If you’re lucky, you can go days, weeks, or even months living a seemingly normal life, then BAM, it decides to give you a kick. That’s the reality of living with neuroendocrine cancer.
Learning to Manage Symptoms
As I have learned to cope with and manage my symptoms, they just naturally become part of my everyday life. So much so that I start to ignore some, not deliberately, but they just seem to fade into the background.
Staying Informed and Avoiding Misinformation
Looking back now, I know I was lucky in the advice I was given when I was diagnosed. My Clinical Nurse Specialist (CNS) gave me a leaflet about Neuroendocrine Cancer UK and advised me to only consult them for more information at first. Stay away from Dr Google, she advised; a lot of the information is outdated, and more importantly, wrong.
Developing Coping Strategies
I knew I needed strategies, and over time I have naturally developed and adapted a set that seems to work well for me.
The first thing I did was to start a daily diary, documenting how I felt both medically and physically, and I have continued with that. I couldn’t manage my care or consults without it. Every six months I go through it before I get my results to pull out anything I need to talk about or flag.
Facing New Challenges: Heart Failure
A prime example of the symptoms puzzle is that in 2024 I was diagnosed with heart failure. At first, I ignored my fatigue getting worse, getting breathless, and simple everyday chores getting harder to do, thinking it was all part and parcel of the cancer progressing.
Finding Support in Others
Talking to other patients online just after my diagnosis, I found out about the local Patient Support Group. I went to my first meeting a month after I was diagnosed, and I can honestly say for me it was a lifesaver.
Nonetheless, the mental strain of this cannot be understated either, and it can creep up on you. The first couple of years were especially bad. I wasn’t angry; it was more like a profound sense of sadness for what I thought I was losing.
Discovering Mindfulness
Keeping busy helps, by that I mean finding something I like doing for myself. Last year, I did a Mindfulness Course through Neuroendocrine Cancer UK. The course helped me to cope with my pain and anxiety.
Adapting to a New Normal
New habits have formed too, especially when it comes to being prepared when leaving the house and taking medication.
All my daily tablets are in pill dispensers that have individual cases, so I can just pop what I need for that day in my bag. I have alarms on my phone so that I don’t miss any doses. Small wins that help make life easier.
The Struggle for Acceptance
The hardest battle for me though has been acceptance of the irreversible changes wrought by my cancer. Knowing that it probably has more in store for me as time goes on, I’ll be honest here and say I hate that there are things I cannot do anymore.
I try to be kinder to myself these days. I can’t walk up a mountain anymore, but I can still walk the dog so long as no steep hills are involved. I can’t clean the house from top to bottom in one go anymore, but I can manage one room at a time.
Some days are awful. They never give advance warning and have the great ability to screw up loads of plans. So, all plans are now caveated with a “maybe”…
A Medal for Resilience
After living with this for 10 years, I sometimes think I deserve a medal. I know many who have been doing this for a lot longer—they all deserve one too.
But we are living with neuroendocrine cancer. I do my best not to let it control me. And will continue to try to live the best life I can: when I can, for as long as I can.
Kath
January 2025
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