My E Blog on 5 May 14.
Exercise
I’m no stranger to exercise having served for 29 years in Her Majesty’s Forces. However, I’m not 21 anymore and I have some health challenges. Chris isn’t 21 either – despite her youthful looks (brownie points…). Some people are quite impressed by our commitment to walk 84 miles. However, I’m hoping that’s going to be the easy bit as the training regime we are putting ourselves through has been hard work and time consuming. Today we walked 12 miles with Chris suffering neck and back pain and me with a sore right toe. This followed a 9.5 mile on Saturday and an 8 mile on Sunday. We will be out again tomorrow morning. There’s an old army saying ‘train hard, fight easy’, I guess that’s our strategy.
All of that said, I can honestly say exercise is improving my general health. I keep a detailed medical log which tracks the things that worry me and my charts are showing excellent progress. Back in January, I wanted to exploit improvements and used the vehicle of fundraising to set myself a physical challenge – thus Hadrian’s Wall. Chris immediately volunteered to walk alongside me.
Echocardiogram
This is a a type of heart scan using equipment much like an ultrasound. Neuroendocrine cancer patients are at risk of developing right sided heart problems which is normally caused by the release of excess hormones from malignant tumours. This can form a white fibrous layer lining which radiologists and surgeons sometimes refer to as ‘plaque’. I actually have this in other parts of my anatomy, some has been removed during surgery. My annual heart scans have been clear to date and the risk is very low given that my biochemistry tests continue to indicate normal hormone levels.
Embolisation
A common secondary tumour site for metastatic Neuroendocrine Cancer is the Liver. Neuroendocrine tumours can be small and they can settle near important blood vessels making surgery at best very risky or at worst inoperable. An embolisation is a procedure carried out by an Interventional Radiologist who inserts a tube into the groin and guides it using x-ray cameras into the main artery in the liver. Once in position, drugs are released to block blood supply to the tumours (they cannot live without a blood supply). These embolisations can be ‘bland’ or the drugs can be mixed with chemo to make it more potent. I was fortunate that my Interventional Radiologist is one of the most experienced in the country. He is also the co-founder of PLANETS Charity http://www.planetscharity.org
Thank you Dr Brian Stedman!
I was diagnosed in 2012. I still don’t understand it all. What is life expectancy. I have syndrome. It is very active in my liver.
Hi Pam, thanks for taking the time to comment. NET Cancer is complex and I’m only at the tip of the iceberg after 4.5 years. Prognosis for NET Cancer is not an exact science and very individual – thus why any statistics you find will most likely be out of date or need some contextualising.
With the correct treatment and management, many people can lead a fairly normal life. Every week I see news from someone who has been living with their disease for over 20 years! I find the trick is staying on top of the side effects (of both the cancer and the treatment). I don’t know where you live but there are many support groups and I’m very happy to give you tailored signposts to those if you message me on my Facebook site here https://www.facebook.com/pages/NET-Cancer-Blog/476922399112723