Episode 11 of my Living under COVID-19 series. A story of Walking the Wall, coping strategies and the London Ga68 PET 30th May 2020 Still recovering from the long walk …. if you missed it it’s here. We have another 3 or 4 days of hot weather so it’s bikes again soon. 🚲🚲 Today my Facebook memory reminded me of finishing our 84 mile walk along Hadrian’s Wall on 31st May 2014. We were so happy and relieved to finish – went straight to the only pub in the village of Bowness for a pint of well earned beer 🍻 Lead picture is the view we had towards Scotland where we stayed that night – beautiful.
Read about our final day – click here For those interested in the entire journey – check out the 6 days here. Day 1 – Wallsend to Heddon-on-the-Wall – click here Day 2 – Heddon-on-the-Wall to Chollerford – click here Day 3 – Chollerford to Steel Rigg – click here Day 4 – Steel Rigg to Lanercost – click here Day 5 – Lanercost to Carlisle – click here Day 6 – Carlisle to Bowness-on-Solway – click here 31st May to 4 June I had a quiet time over this period so took the time to post some of my (apparently) unique perspectives and personal views on living with cancer. 2nd June 2020 I can’t undo my diagnosis of advanced and incurable cancer. I have cancer but I can still get on with living my life. I wrote this article after someone messaged me asking if I saw myself as a “sick person”. I couldn’t answer with a yes and explained why in this post. I sometimes get in trouble with this post but you need to remember, it’s only my opinion and how I personally view things. Anyone who doubts my empathy for others just needs to read some of the reviews and recommendations on my website and Facebook sites, including my private group. I’m not sick, I just have cancer. 3rd June 2020 One of the first things I learnt on joining a Facebook group was the “5 E’s” – that seems so long ago now. Over the years I’ve discovered another set of 5 E’s which I believe are also important for long term coping and quality of life – I accept it’s a balance and a more delicate one for some. If you want to read more about how I apply the “Other 5 Es”, check out my June newsletter published – click here For those who are wondering what the 5 E’s are, they are pretty much only for so called carcinoid syndrome and if you’re interested, there’s a link to an article inside this one which you can read by clicking here.
5th June 2020 Facebook memories from my first ever Gallium 68 PET Scan. Bit of a story, in fact a story of retroperitoneal fibrosis, pneumonia, London and a Ga68 PET scan. I came back from a UK staycation in late May 2018 and within a week was floored by a nasty chest infection. I knew from a previous bout in 2002 this was the same although less serious – nonetheless, I was incapacitated. I’d had my surveillance meeting in the middle of May, delivered a patient talk to a bunch of dietitians courtesy of Tara Whyand-Dietitian and I was feeling quite pleased. However, the output of the routine surveillance indicated known retroperitoneal fibrosis discovered in 2010 was looking pretty close to one of my ureters (pipes between the kidneys and the bladder) – the Ga68 PET was a number of reactions to that discovery. Retroperitoneal fibrosis is just like mesenteric fibrosis (a form of desmoplasia commonly found in midgut NETs) – read more here about Desmoplasia – more common than you think.
I was really struggling with the nasty chest infection but was reluctant to cancel my first ever Ga68 PET so I played it by ear up to the last minute. In the end, I wasn’t really well enough to go but I asked Chris to come with me for moral support and we both got the train. Guys Cancer Centre is close to the London underground and right next to “The Shard”. I was going to be in there for a couple of hours and my biggest fear was having a coughing fit in the scan – particularly as it was important to keep still. Chris decided to have a mini-tour while I was in isolation – thus the lovely pictures you see here. The PET centre is located in one of London’s most historic districts but which is now dotted with many modern landmarks. You will see The Shard, Tower Bridge, The Tower of London, City Hall, Pudding Lane, Monument, and some interesting fence work on the older Guys and St Thomas Hospital. I survived the scan without incident and then wrote two articles: 1. Ga68 PET Into the Unknown – started as a post about my feelings over that period but is now one stop shop of information to help others doing their first Ga68 PET scan. 2. Ga68 PET – a game changer. A follow up with my results plus some other facts about this relatively new scan for NET patients. I also lost 10 pounds over a period of a month and it took 6 months to get that weight back. Enjoy the remainder of the pictures – click here.