BLOG – Diary of a Cancer

By: Leanne Talbot

Posted on: 4 years ago

Trigger Warning.

Please note that while some stories end on a positive note, others may depict the challenging and difficult road that many neuroendocrine cancer patients face.

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I suppose it all started with a Heart Attack at the end of March 2019. This has since been queried by the Oncologists, but the Cardiologists inserted two more Cardiac Stents.

We (because this really involves Patricia as well) then started a nightmare year of my twice weekly visits to the local Cardiac Rehab. Gym, interspersed with visits to my sister, Gillian, with terminal lung cancer. The Gym involved having my Blood Pressure taken and being questioned about my health, etc. before being allowed to exercise. On several occasions I reported chest pains or discomfort and would immediately be given an ECG, which never really showed any changes.

Eventually, late in 2019, I was referred to the local hospital’s Cardiac Clinic and was given an appointment for an Exercise Tolerance Test! Before this could happen, Coronavirus came along and the appointment was cancelled. It was eventually replaced with an Echocardiogram. To cut a long story short, from this I was diagnosed with Heart Failure at 35% cardiac efficiency. This necessitated further tests (“Are you claustrophobic?”) starting with a Cardiac MRI Scan, which showed that my heart was relatively OK, so the doctors had a look a bit further down and decided that my liver didn’t look very healthy, so I was referred to the local Cancer Centre. Fairly quickly came an appointment for a CT Scan and a Liver Biopsy.

The diagnosis – Aggressive Cancer of the Pancreas with metastases to the Liver. This was later clarified as: “Metastatic well differentiated  neuro-endocrine tumour of pancreatic origin with liver metastases – G3 Ki-67 of 37%”.

There then came an even worse couple of months waiting for letters to drop through the front door and telephone appointments to arrive. I was prescribed Creon 25000 (2 to 6+ with every meal) to replace the digestive enzymes normally produced by the pancreas. Eventually, Patricia, Edward and I saw an Oncologist (mask to mask) who described the cancer, the treatment regime that would shortly start and that they were very positive that, although they might not be able to get rid of the cancer completely, they expected to be able to control it and give me many years of an active life to come.

The following week, Patricia and I saw another Oncologist, even more positive than the first, who redefined the regime slightly to six cycles of four weeks each, each cycle consisting of two weeks of chemotherapy pills followed by two weeks of rest; at the end of each cycle there would be a blood test, a telephone consultation and the issue of the pills for the next cycle. Every three cycles would be followed by a CT Scan.

 

Select here to head to David’s blog where David writes about his experiences and treatments.  

Everyone’s experience of neuroendocrine cancer is different. Take your time, and engage with the stories in whatever way feels right for you.

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Sharing what you’re going through with others can be incredibly powerful, helping others to feel less alone, find hope and reassurance, and feel more confident and empowered.

If you have a story to share, we would love to hear from you.

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Share your story

We’re always looking for people to share their experiences with Neuroendocrine Cancer. Whether you have the personal experience yourself or through a family member or friend, we use stories on our website, on social media, in our patient information, and on occasion, in the press.

By raising awareness of Neuroendocrine Cancer (NC), we can reach and help more people. Personal stories highlight many relevant aspects of living with NC.

Experiences provide insights that support the education of healthcare professionals, raise awareness of possible signs and symptoms pre diagnosis, raise awareness of NC in the general public arena and encourage and inspire other people who have just started their pathway.

Please complete the form below to share your story.

A note about reading and listening to personal stories

Everyone’s experience of neuroendocrine cancer is different. Some stories may offer hope and reassurance, while others may be difficult or upsetting to read or hear. Take your time, and engage with the stories in whatever way feels right for you.

Remember that treatments and outcomes vary from person to person. These stories offer personal perspectives and support, but should not replace advice from your own healthcare team. If something raises questions about your care, speak to your doctor or clinical nurse specialist.

Support and next steps

You do not have to face this alone. Support is here when you are ready.

Disclaimer

The stories and opinions shared here reflect the personal experiences and views of individual contributors and do not necessarily reflect those of Neuroendocrine Cancer UK. They are provided for information and support and are not a substitute for professional medical advice.


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