The Week that Was

We've had a busy week, with Zoom on Tuesday and our BBQ and cycle challenge on Saturday, all very well attended and thoroughly enjoyed.

BBQ with the Wytham Wanderers

It was a rather murky morning at Wytham Woods, but full of beans and good cheer, an intrepid band of 18 super-cyclists were gathered for 'the off'.  Meanwhile not 3 miles away, in Ann's kitchen, our BBQ delights were busily being prepared. 
OOSO guests started to arrive for the BBQ at 3pm, with a steady flow of hungry folk and littluns to feed, we had our hands full by 4pm!  And soon after 5pm, after a 56 mile cycle around Oxfordshire's lanes, our team of riders led by Nick and Anne returned to join the party. We were hoping for approximately 80 guests overall, but in the end we fed and watered an incredible 118 people. It was truly fantastic to get together again, after such a long period of isolation and gloom, to see each other, to chat and make new friends, it was simply great. 
After the final tot-up, and before expenses, together we raised just over £4,000, another very memorable day.  Thank you again so much for supporting us! 

Zoom news

For the first time in 9 sessions we didn't have a guest speaker. Instead we opted for an open discussion sharing our experiences of four pre-nominated topics including 'appetite, blood tests for cancer, B12 and iron, and Creon supplements to combat weight loss'.  We certainly had useful discussions, facilitated by Liz Ward and Dr Richard Owen, fielding various technical queries.  As a summary, here's a few of the main points raised;
Appetite is affected by surgery. This relates to the removal of tissue that otherwise stimulates appetite through secretions. The sensation of fullness is also affected. Appetite slowly returns over a period of months, sometimes taking more than a year, and fullness is a re-learnt sensation, largely through experience and knowing one's own limits. Following surgery it's important to remember to eat little and often. Initially, keeping a daily record or using alarms are helpful reminders to eat. In the longer term, a reasonable sensation of appetite returns for most people and a more normal dietary routine can be looked forward to. The sensation of taste post-chemotherapy recovers quickly and isn't affected by surgery. 
'Galleri' blood tests for Cancer.  This is a new trial taking place to advance early detection of many cancers including oesophageal cancer, and might in the future also help to more effectively prevent cancers from returning after treatment. As with most trials, these take time to evaluate and bring online, and are unlikely to be of benefit to most of us now, who have already been through a diagnosis and treatment stages. Proposals led by Dr Sheraz Markar to routinely monitor patients after treatments using regular follow-up CT scans will complement a growing suite of tools that will benefit patients like us in the future.  
B12 and Iron. These are essential ingredients providing us with daily energy. Low levels of B12 and iron can lead to fatigue and chronic tiredness. Almost all patients having had a gastrectomy become deficient in B12 and are likely to need quarterly B12 injection supplements from their GP. Whilst esophagectomy patients might not require additional B12 it is recommended that they ask their GP to annually check their blood for B12 and iron just in case supplements are recommended. In some cases, levels of B12 appear normal for several months post surgery due to reserves naturally held within the body. Over time these might become depleted, so it is helpful to monitor levels through a GP.      
Creon supplements for weight loss Creon is a helpful medication that improves the absorption of nutrients after a meal. It is usually only prescribed when symptoms of chronic malabsorption arise resulting in weight loss. Symptoms of malabsorption include partly digested food and pale-coloured, oily, floating stools. It is fairly common for up to 75% of oesophagectomy and gastrectomy patients to experience malabsorption, however for many this does't persist and body weight gradually and naturally stabalises . Although Creon isn't a 'silver bullet', it is a useful short term and long term solution, to improving absorption and maintaining weight. If a patient is concerned about their weight they should contact their dietician (Liz) or Advanced Nurse Practitioner, ANP (Anne, Anita, Julie, Gill) at the Churchill Hospital for advice.  

Zooming Next Time

If not already in your diary, our next zoom session will be on Tuesday 2nd November at the usual time of 7pm.  We are fortunate to have Dr Kinnari Patel, Clinical Oncologist, joining us to discuss the latest Chemotherapy treatments, improving success rates and the side effects, both in the short and long-term. We also have Dr Chris Jones, who is leading a national review of NHS patient care for Upper GI cancer sufferers.
As usual, Zoom invites will be circulated a week ahead of the meeting. To receive an invite for this and future meetings, please email me now. If you're not sure how to use zoom and would like a quick practice beforehand, just drop me a line here
Kind regards
Matt Carter
Chair of the Trustees
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