Kath was diagnosed with metastatic neuroendocrine cancer of the small bowel in 2015; just six weeks before her first grandchild was born. Despite the shock of being diagnosed, Kath was determined to live life to the full with plenty of experiences and opportunities along the way. One of those new opportunities is volunteering for Penny Brohn UK, and helping raise awareness of the services that are available to people affected by cancer.
"Having a long term cancer that you are stuck with for the rest of your life has a big impact on your mental health and you can feel very isolated if you do not have a strong support network. When I got in touch with Penny Brohn UK, I really liked the charity’s holistic approach and how it helped me to take back some control over my health and wellbeing."
I was diagnosed with cancer when I was 53 years old, but I had been ill with non-specific symptoms for a long time and felt like I was constantly in and out of the doctors. I travelled a lot for work and the symptoms were making it increasingly difficult to my job as it was having a major impact on my reliability. I had been experiencing stomach problems on and off for a good few years; I was in pain a lot of the time, fatigued, and catching everything that was going around, but no one seemed to be able to join the dots.
As I had medical insurance through work I decided to use it to get things moving. In 2007 I had had adhesion surgery and because I was experiencing similar symptoms after discussion with my consultant it was agreed that repeating the surgery was the best option, so this was done in May 2014. The consultant said the adhesions hadn’t come back but new ones had appeared and it looked like there may have been an infection in my bowels. I didn’t recover as well from the surgery as I had done the first time round. I was having night sweats and my stomach continued to bloat and cramp causing me to need the toilet far too often, at times the pain was unbearable, nothing seemed to touch it. I ended up in A&E a couple of times. I’d had a hysterectomy when I was 31 and had gone through early menopause in my mid 30’s so knew these symptoms couldn’t be attributed to that, and thought if I heard IBS one more time I would start screaming and not stop!
I was advised to try an exclusion diet, but apart from confirming an intolerance to wheat it didn’t make any difference. I was then referred to a gastroenterologist who requested a number of scans including a nuclear scan, CT scan, MRI and ultrasound which confirmed further investigation were required. So from there I was then referred onto the endocrinologist who said there was a suspicious lump in my small intestine. Lots of tests were done, but they proved inconclusive and it was agreed once again that they would take a look and try to take it out. During the operation the surgeon wasn’t able to remove the tumour, but noticed some suspicious nodes on my liver so took a biopsy.
A week after surgery and six weeks before my first grandchild was born; I was told that I had metastatic neuroendocrine cancer and that I had probably been living with it for seven to 10 years. Only once it had taken up residence in my liver had it decided to make itself known. In that moment my life was tipped upside down, it was a lot to take in, nobody wants to hear that. I was worried about how best to tell my family and friends and it took me a long time to get my head around the diagnosis.
My oncologist admitted that they didn’t know a lot about neuroendocrine cancer but explained that it doesn’t go through the same pathway as more common cancers but spreads through the endocrine system. So I was referred onto the Christie Cancer Hospital in Manchester, which is also a Neuroendocrine Centre of Excellence. The primary neuroendocrine tumour is in my small intestine within the mesentery layer, it is also in my liver, on the peritoneal wall, and in various lymph nodes including one on my aorta. As a result surgery is not really an option unless there is no choice, I am classed as a watch and wait, not an easy thing to live with at times…
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 two months after I was diagnosed and put back on two 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 six 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 two 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!
Kath discovered Penny Brohn UK
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 UK 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 a long time to come to terms with it, 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 to 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.