My nurse put me in touch with the NET Patient Foundation which supports patients with neuroendocrine cancers. NET Patients has and continues to support me on my journey; initially they provided me with information about my diagnosis and treatment options as well as putting me in touch with other people who are living with neuroendocrine cancers. It was through NET Patients that I heard about Penny Brohn UK. I looked at the Penny Brohn UK website and saw information about a half day introductory course on ‘living well with and beyond cancer’ that was running locally and decided to go along. I really liked the charity’s holistic approach, as it recognises that a person can often be seen as just the patient during medical treatment.
I was prescribed Lanreotide injections every 28 days to help control my symptoms and hopefully keep the cancer stable. I will need these injections for life. I also need to take pancreatic enzymes with meals to help absorb nutrients from my food, and to help to avoid problems related to malabsorption. I was also able to use my medical insurance to have PRRT treatment, as at the time I started it was not in the NICE register; it had been removed 2 months after I was diagnosed and put back on 2 months after my first treatment. So I felt very lucky to have this option, realistically my only option. PRRT (Peptide Receptor Radionuclide Therapy) uses gamma radiation to target neuroendocrine tumours, and I had four rounds of treatment over a 6 month period, which is the standard, it was a bit of a roller coaster ride. Each time I had treatment I was radioactive and had to stay in isolation for approximately 2 weeks each time as I waited for the majority of the radiation to leave my body, it can be quite lonely. So you can imagine my disappointment to find that I wouldn’t glow in the dark!!
After the half day course I decided to attend the Penny Brohn UK two day Living Well course in Stoke on Trent once my PRRT treatment was completed. I loved everything about the course. I found it really helpful to learn different ways to cope with stress; how to exercise in a manageable way; and how I could help myself and take back control. In just two days I felt that I had opened up more than I had been able to previously to my friends and wider family. I hadn’t realised how much I had been bottling up and how much I needed to let out my feelings. I find it so helpful knowing that Penny Brohn will always be there if I need additional support. I felt so good after attending the two courses, the facilitators were amazing and helped me to open up without any pressure. It is surprising what you can talk about when you know you are in a safe environment.
Being diagnosed with neuroendocrine cancer tipped my life upside down (as will any type of cancer diagnosis) and it took me long time to come to terms with, especially as it is such a confusing and complex cancer. Furthermore, having a long term cancer that you know is incurable has a big impact on your mental health, and can leave you feeling very alone even with a strong support network. Everyone has needs beyond the medical approach to treating cancer but often people don’t know where turn for either practical or emotional help.
This is where Penny Brohn UK come into its own, I really liked the charity’s holistic approach and how it helped me to take back some control over my health and wellbeing, especially with regard to local help and support. I liked it so much that I wanted to let other people know this kind of support was available, and more importantly available to anyone affected by cancer, any type of cancer, and as such decided to offer my services as a volunteer for Penny Brohn UK.