Thank you all who attended our last Happy Hour on the 3rd March. And, again, I write to you almost two weeks after we met. As I write, I am of course preparing for tomorrow evening when I attempt to lead a few of you in cooking a Moussaka, Greek Cypriot style – as my Mum taught me. I have to say, that I am a little nervous – after all, we will all go hungry tomorrow evening if I fail!
Now, a round up of our discussions last time. We were again very lucky to have Dr Danni Browning and Dr Irene Chong join us, with Dr Chong doing so from her car. I always feel really privileged that we have our wonderful clinicians join us, and then they go the extra mile and manage to join us while driving, and not for the first time.
mASCARA (still) waiting for NHS go ahead:
The latest from the mASCARA project is that Dr Browning has a meeting scheduled with NHS England to get sign off, expected imminently, to begin going out to hospitals so that they can begin loading their data. I think they had better hurry up – the international recruitment for mASCARA is gathering pace with a new site in Turkey the latest recruit.
Last time Dr Browning told us of the first mASCARA publication, where RTD was acknowledged, and I included the link to it. This time we heard that there are two more papers in progress, and that a new fellow (Micol) is joining the team in April with a view to begin working on mASCARA in October. So, we are assured that there is continuity in the work we are funding, and we look forward to welcoming Micol.
I was also able to give Danni some news – that the RTD Trustees have signed off on her application to fund the operation of the mASCARA register for a further two years, by which time, we hope it will be a fully operational and active resource for clinicians to use in curing this rare disease.
An update on her laboratory and other breaking news from Dr Chong:
With scientists now vaccinated, which is critical as scientists and clinicians mingle, with many going in and out of hospitals, activity in laboratories continues, though limited due to the pandemic.
Dr Chong updated us on an exciting new collaboration between Imperial College Engineering faculty, the ICR and the RMCH clinicians – another example of how bringing together disparate disciplines results in amazing innovation! In this case, a new ring like device is being developed that may be used to produce readings from patients that can be compared to radiology images. This research is focusing on evaluating how effective this device is in measuring hypoxia in tumours and Dr Chong referred to the use of tissues, in this research project, from the Deferral of Surgery Trial that Paul is still on following his own treatment!
We are learning so much at RTD about what we have come to know as “Translational Research”. Dr Chong describes this latest collaboration between engineers, scientists and clinicians, as going “from the bench to clinical trials” – in this case to predict outcomes of radiotherapy. Now wouldn’t that be amazing – to administer radiotherapy only where it is needed and will be tolerated?
And a little on where we are now with pandemic:
A very reassuring sign is that Covid wards are being cleaned and the statistics, measuring the level of infection, mortality, etc., are reassuringly coming down, as vaccines are being rolled out. And we were reminded that there is lag on these as most patients in hospital are older and it takes longer to get them home. Covid rotas for doctors are also being reduced and expected to cease by our next Happy Hour. Reassuringly, RMCH has not stopped working on complex cases, and the use of private hospitals has meant that treatments are carrying on.
Finally, announcing a couple of exciting new RTD initiatives:
Rosey’s RTD poetry book:
When Rosey was supporting her husband Paul, while on treatment, she cheered him up with her poetry and, before he died, she promised him that she would one day publish her poems. I have had the privilege of hearing some of Rosey’s work and I am with her hubby – time to publish! Well, Rosey has very generously offered to use her poems as a backdrop – interweaving them with stories (funny ones are allowed), poems, anecdotes, photos and illustrations from the RTD Community and to publish a book of these, with proceeds going to RTD. Danni and Irene said they would chip in too – with a clinicians view of RTD, and Anne Allega has offered to put Rosey in touch with an illustrator. Rosey hopes to use the book as a way for people to get to know us and to hopefully want to join us. So, all you budding authors, get those creative juices running.
Introduction of specialist subjects at the Happy Hour:
I have been wondering how we can do more at our Happy Hours and floated the idea of covering specialist subjects at our last meeting. Thank you for your positive feedback and for your suggestions, which included physio and exercise following treatment, diet awareness and mental wellbeing. And thank you to Anne who has agreed to send me some topics for the latter subject for us to cover. I hope to find good speakers on these topics and to devote 15 / 20 minutes to one of them each Happy Hour.
Since we met, I have been developing the idea and now have news on our first two or three topics:
- Diverticulitis – I mentioned at our last meeting that one of the topics I want to cover is Diverticulitis – a condition that often leads to the need for the same sort of surgical treatment as that needed for Bowel Cancer and that is sometimes a precursor to BC. I am very pleased to announce that Dr Christos Kontovounisios and Professor Brown will join together in a presentation on this subject to us in our April meeting. Please let anyone who may be interested know – it would be good to reach as many people as possible, not just RTD members, as awareness of this distressing condition is much needed.
- Diet Awareness – we think have identified a nutritionist with a very interesting proposition, so we hope to announce a date and a name for this topic soon.
- Mental Wellbeing – with Anne’s help, I hope to cover a topic from this wider issue, soon.
Next Happy Hour:
Hope you enjoyed reading the summary of our last Happy Hour and that you will come to our next one on the 7th of April.