For a New Year it's been a busy one.  Everyone seems to be flat out - quite understandably after two years of lockdown we just want to make the most of everything.

Friends forum feedback

We recently held an afternoon workshop, inviting twelve of our regular volunteers and their partners to meet up with a small group of clinicians from the Churchill's UGI team. We discussed ways to further develop dietician services and advice given to us as patients, and we took a critical look at the patient pathway, from diagnosis through treatments and recovery, to see what could be done to help enhance the overall patient experience. After two hours of lively banter and passionate debate, here's a quick summary of the main points raised:

• Our overall experience of treatment and care is very positive and we hugely appreciate the hard work and dedication of all the staff at the Churchill Hospital.
• Dietician services are a vital component of patient care throughout the entire pathway, needing to be bespoke to the individual, catering for acute and timely care.
• Communication is absolutely key in delivering effective dietician services, providing patients with regular check-in calls and being contactable seven days a week.
• Advice provided should include contextual information - "why it's important to follow this advice", with a forward look to what can be expected next.
• The patient pathway is a complicated set of scenarios that play out differently in each individual case, with complications often causing delays.
• However, patients and carers would benefit from a simplified understanding of the pathway, presented by a diagram - so we are better prepared for each stage of tests and treatments.
• It's important to be offered, or provided with, all the relevant information and choices about treatments, surgical options and after care. This will enable patients to be actively involved in their own care, helping to make informed decisions.
• Excellent communication from consultants and doctors (empathetic, regular, timely, clear, consistent) is absolutely vital in helping patients and carers cope with anxiety and worry about their treatment, and with what's happening next.
• Having a clear and friendly day to day line of communication with a Senior Nurse is essential throughout treatment and recovery phases - knowing who to call is very important if there's a problem, or a more general enquiry about appointments, delays in treatment or results.  

So what happens next? We'll pull together a fuller summary of the session with head-line recommendations for lead Clinicians at the Churchill Hospital to consider, and also those at five other NHS Trusts within the Thames Valley Cancer Alliance. In addition, the summary will be presented at two conferences in April where clinicians from all over the UK will be attending. 

Café Catch Up

We recently met at the Bicester Village Garden Centre for a very enjoyable lunch, with 21 of us seated at two reserved tables in a quieter area of the café. The food was excellent and good value! But the company was even better. It never ceases to amaze, when we meet up, listening to conversations and shared experiences, just how resilient and determined we all are, it's nothing less than inspirational. Having cancer is tough - it brings things into focus, and makes us better people - certainly the café catch ups are proof of that. So please come along, you'll find it relaxing, informative, fun, and inspiring. 

We have tables booked for lunch, from 12:30 on Monday 20th March at Hilliers Garden Centre in Little Marlow. If you would like to join us drop me a line here. 

Top Tip

Today's top tip, again might seem pretty obvious but is so very important to do. Deborah kindly provides us with this one, and that is to 'eat what you fancy'. Even in the dourest of moments when we're struggling to eat, or when we lose our appetite and can't taste anything, the only practical option is to try something that we know we normally like, our most favourite snack, whatever it might be, perhaps in a softer from if needed, for example soft creamy mashed potato mixed with finely chopped smoked salmon, or pureed banana and ice cream, trifle, raspberries and raspberry sorbet, or just a simple packet of crisps. Whatever it is, if it's something you fancy, then go for it! During treatment and afterwards it's important to keep eating little and often, to maintain energy and sustain a stable weight. These days, nearly eight years on from my treatment and surgery, the trouble is I fancy just about everything!   

Zoom Review

This last Tuesday we hosted our usual one-hour session, with 42 guests dialling in to hear about the latest developments in post surgical care. Dr Kerry Avery and Hollie Richards led a short and concise presentation describing how oesophageal cancer patients at the Churchill hospital can, if they wish, become more involved from May in assessing their own recovery via access to an online assessment tool which tells the patient what's 'normal' and what should be checked out. The idea being if something crops up, it can be dealt with quickly lessening the likelihood of longer term complications. As Kerry says, "this is just the beginning, we plan to do the same for those into long term recovery, where persistent side effects are less well understood." 

We had lots of input from our audience with observations and suggestions, which will undoubtedly help Kerry and Hollie develop this important innovation. As part of the project they are setting up a Patient Advisory Panel, which would only involve two online meetings a year. If you are interested in joining the panel drop me a line here and I will put you in touch with Kerry.

What's Next?

There's more coming up, here's a quick list!

• February is "Oesophageal Cancer Awareness month" promoted by the Thames Valley Cancer Alliance (six NHS Trusts including Oxford) - to find out more, go to thamesvalleycanceralliance.nhs.uk and follow the home page links.
• As part of this awareness month, we/OOSO will be on the local BBC Oxford radio and partnering short social media awareness films, details to follow soon.
• Our next 6-weekly zoom will be held on Tuesday 21st March at 7pm.  We'll be focussing on dietary top tips and choices, with a full 40 minutes of Q&As, don't miss it! If not already signed up to our zoom list and you'd like to join in, drop me a line here.