Conference Catch Up November 2020
The pandemic didn’t stop us ! We held our Autumn conference via the Zoom platform on November 3rd.
Our founder, Susan Moore, would have been proud of us but very sadly her death has robbed us of her smiling, energetic presence. The first item of the conference was, fittingly, a very moving pictorial tribute to her, introduced by her great friend and Chair of Trustees, Jan Davis.
Trustee Amanda Orchard led the “techie” part of the proceedings and took us through the etiquette of Zoom meetings. Gill Monsell, conference organiser, then introduced the speakers.
Henry Goodfellow was the first of these, speaking on “Digital Tools to help people with cancer.”
He told us of the increasing computerisation of all records and data in the NHS. His team are particularly working on a smart phone app which will enable patients to have control of all their info, test results, appointments and advice in one place. It will be updated as needed online and will tie in with monitoring devices such as blood pressure testers, cardiac monitors etc.
This app is tailored specifically for oesophageal cancer and is called “Project Swallow”, however there are plans to expand it to other types of cancer and other conditions.
To see Henry’s talk please visit: https://www.youtube.com/watch?v=evyTpiJh080
Henry is an NIHR clinical lecturer in eHealth at University College London. He works 40% of the time as a GP in London and the rest as an academic.
She emphasised how very useful exercise of most sorts can be in aiding recovery, reducing fatigue, minimising side effects of treatment, increasing general wellbeing and improving mental health. The advice was to try for 150 minutes of exercise per week and to avoid sitting in one place for long periods of time
Belonging to a supportive group helps greatly in maintaining motivation to “keep at it”
To see Jenny’s talk please visit: https://www.youtube.com/watch?v=E-ATHO7XooI
Jenny is a GP in Bedford. She has “run” since a teenager having no hand-eye co-ordination for other sports. In 2008 she was diagnosed with breast cancer and found moving, particularly gentle walking, helpful in her recovery.
In 2011 parkrun came to Bedford and Jenny rapidly became involved, gradually increasing her distances. She then started to realise the benefits to health of moving and became a Run Director for Bedford parkrun. She then encouraged her practice to become a parkrun practice. 2 years ago, after 5K Your Way a parkrun friend had breast cancer and together she and Jenny encouraged Bedford parkrun to host 5K Your Way.
After a quick comfort break, there was a choice of breakout groups:
Andrea Cliff and Alex Brooks gave us lots of information and advice about the distressing condition, Lymphoedema.
Lymphoedema can happen to anyone and although it is commonest after cancer surgery, especially involving pelvis, breast or head and neck, it can also occur as a primary lymphoedema unrelated to any surgery.
The two speakers emphasised that the right sort of exercise was vital and that there are other specialist techniques which, taught by knowledgeable professionals, could help enormously.
To see Andrea & Alex’s talk, please visit: https://www.youtube.com/watch?v=4f8QVywwfqA
Andrea is one of the HCCN community cancer nurses, with an interest in lymphoedema. (The most common physical issue our patients, of any type of cancer, deal with whilst living with cancer.)
Alex is an Advanced Occupational Therapist (OT) by background with over 15 years’ experience in complex trauma, rehabilitation, and palliative care. Her specialist interest in oedema and scar management developed during her time spent working with the army, at the Defence Medical Rehabilitation Centre (DMRC), Headley Court.
Kate Abrahams gave a talk on Physiotherapy, especially with reference to Axillary Web Syndrome.
Kate gave us an introduction to axillary web syndrome – or cording as it’s also known – using some easy to understand slides. Although no-one in the breakout group was particularly affected by this problem, Kate was able to answer our questions. She helped one user self diagnose her pain: Kate showed us a few stretching exercises (seated) where median nerve stretch can be used by anyone at risk of carpal tunnel syndrome – which with all our sitting and typing during lockdown, comes as a welcome relief.
The importance of maintaining one’s balance as we get older was also a highlight, offering simple balance exercises when queuing or even washing up.
To see Kate’s talk, please visit: https://www.youtube.com/watch?v=_NQkO6zOzgk
Kate is a physiotherapist with over 30 years’ experience. For the past 12 years she has been a director of Woodfield Physiotherapy Centre, a private, multidisciplinary practice in Colmworth, North Bedfordshire.
Over the past eight years she has seen an increasing number of patients with Axillary Web Syndrome and has treated them, usually successfully, alongside a colleague who practises manual lymphatic drainage.
Jill Wiles ran a wonderful mini yoga class. Her session was called “Cancer takes your breath, Yoga gives it back”. This is so true not just for the patients but their families and friends too. A diagnosis of cancer certainly does take your breath away. Jill gave us lots of information about yoga along with the benefits for both mind and body.
We first did a breathing exercise of equal breaths, it was calming and I felt centred and relaxed. She gently took us through some work with arms and shoulders, with an easy side stretch too. This was all while we were seated in our chairs. Jill encouraged us to work with our breathing while releasing and tensing both our hands, and later our feet. To end the session we went back to our breath as Jill guided us through noticing the breath in our bellies, the sides of our ribs and our collar bones – ending with breathing into our heart space.
To see Jill’s talk, please visit: https://www.youtube.com/watch?v=SmRksrjezyc
Jill has been teaching Yoga for HCCN for three years. She qualified as a yoga teacher in 2014 since then she has done two additional specific yoga teacher trainings for people affected by cancer, one in the UK and one in Miami. She believes that yoga is not about the fancy postures we see people doing but about a holistic system to bring balance to your mind and body, helping to improve your overall wellbeing.
Jill says, “Over the years it has been wonderful to see service users flourish and gain confidence.”
Our third speaker was Gini Melesi, former lead nurse for HCCN and joint founder, with Susan, of HCCN. Gini now works for the Cancer Alliance in the East of England and she explained to us how these alliances work. It is heartening to know that the aim is to standardise policy and procedures across the region (and indeed nationally) so that nobody misses out on the screening tests and treatments available to them. The aim is that –
- Fewer people will get preventable cancers.
- More people will survive for longer after a diagnosis.
- More people will have a positive experience of care.
- More people will have a better, long-term quality of life.
More comprehensive screening is being targeted at the higher risk areas of population. GPs are being offered the ability to use a barrage of tests on suspicious cases without an obvious diagnosis, so that the likelihood of picking up cancers earlier will increase.
Gini also gave us an update on how these services had been affected by COVID. Obviously a lot of procedures had to go “on hold” but referrals are now back up to pre-COVID levels. One of the worst to suffer was any form of diagnostic endoscopy, due to the increased risk associated with aerosols involved in its use.
Gini stressed that communication and co-operation throughout the pandemic were vital to maximise the availability of resources to the maximum number of people.
To see Gini’s talk, please visit: https://www.youtube.com/watch?v=MbLnSTPg9Go
In 2013, Gini started the Hunts Community Cancer Network (HCCN) – it was a 2-year pilot and one of seven pilot sites in the Anglia Cancer Network.
After a stimulating and informative morning, in which we all managed the new format without mishaps, we would like to thank all the speakers, breakout group leaders and besides those mentioned at the start, big thank yous to Trustee, Sallie Crawley for putting together Susan’s tribute slide show and running the publicity and social media side of the event. Also Amanda Burridge, (who sadly could not be with us) for running the booking procedure, Karen Moseley, Head HCCN nurse and Jan’s husband, Rob Davis for IT support – also anyone else who I have not mentioned – THANK YOU and see you all at our next Zoom conference in April.
Please encourage all your friends to attend and tell them that it’s really not scary and you can take part without leaving the comfort of home and have as much coffee, tea and biscuits as you like ! – but sadly not the excellent Racecourse lunch or the personal contact – but that WILL be back as soon as we can !
Report by Gill Monsell, Conference Co-ordinator