Living with Neuroendocrine Cancer during COVID-19 restrictions (Episode 11) – a story of Walking the Wall, coping strategies and the London Ga68 PET


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.

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

the other 5 Es (daytrip)

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.

the shard and guys
Guys Cancer Centre London with the famous Shard building in the background

Other Stuff

I’ve been working on reorganising some of my Facebook pages, I had 5 and now down to 3. It would have been down to 2 but Facebook isn’t playing ball so will try again later. I’d like everyone to also ‘Like’ this linked page ➡️Neuroendocrine Cancer⬅️ but please don’t unlike it, I’ve spent some time building that up! And if you know anyone who might benefit from that page and/or this one, be sure to suggest it.

The lockdown has given me some time to look at a new software package I had to help convert my blogsite into a website. I’ve also been working on an A to Z facility and rather than just knock up a big long table which is a pain to keep up to date, I wanted to integrate it into my website where updating is much easier as I can then link to references etc. It’s proving to be more difficult than I thought but I’ve published a prototype version which will be useable for some but it’s far from being a complete project – I need to get the A to Z button ‘widget’ sorted and I need to populate short descriptions which will take weeks.  It does however link all my blog ‘tags’ to an article containing a description until I can populate them (although I have done the first few in the list as a prototype). It’s also prompted me to normalise and reduce the number of tags I use – see what I have so far clicking on A to Z – be gentle, it’s the beginning of a new project 👀

Private Group. There’s a constant stream of new members and discussions continue in this Facebook private group (click here to join). The group is quieter than usual but Neuroendocrine Cancer issues continue, people continue to be diagnosed and arrive in need of help – often just someone to listen. London and New York are the biggest two cities represented in the private group and I see them both in the headlines – please take care all.


My 12 lockdown episodes

In the first update of this series, I explained that I kept my diary going, but again, only on my public Facebook page, so I was prompted to document these on my blog site to cater for those not on Facebook who only see what I produce in blog format. But it’s my intention to also post these on my other public Facebook sites. Because I was self-isolating, Chris was also isolating under the rules and she was also feeling under the weather. During our self-isolation period, the government ordered a “lock-down” (a bit like the shelter-in-place term used in USA) but out of self-isolation, we were still allowed out for some exercise and other essential trips such as doctors’ appointments and shopping for essential items.

The second update is a nice walk to a local beauty spot and back.

The third update is a potpourri of events including hair issues, a broken tooth and my first COVID lockdown injection covering 14/15 Apr 2020.

The fourth update is a story of bikes, ponies, wisteria and Vitamin D covering 16th – 21st Apr 2020.

The fifth update is a story of greenery, sun, adventure and Irrfan

The sixth update is a story of footpath etiquette, sheep, donkeys and dopamine covering 30th Apr – 3rd May 2020.

The seventh update is a story of swans, cycling, VE Day and my 124th monthly cancer treatment covering the period 6th – 11th May 2020.

The eighth update is a story of nurses, trees and Canada covering the period 12th – 17th May 2020.

The ninth update is a story of cream teas, peaks and blue sky covering the period 18th – 23rd May 2020.

The tenth update is a story of the Wall, Swans, Dundee and New Forest History, covering the period 26th – 29th May 2020.

The eleventh update is a story of Walking the Wall, coping strategies and the London Ga68 PET, covering the period 30th May – 5th June 2020.

The twelfth update is a story of surviving, cycling, Scottish holiday memories including the ‘Fairy Pools’, covering the period 7th – 15th June 2020. 

Thanks for reading.


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