Note for Happy Hour on 2nd June 2021
Thank you all who attended our last Happy Hour on the 2nd June. I know that I am late – again – with my write up! I did have good reason this time as I was a little distracted with the happy matter of a small (Covid era) wedding – mine and Paul’s. Thank you all for your best wishes. Paul and I are now back and fast catching up – good job too as our Happy Hour is next week!
Our Last specialist subject – “scanxiety”
Now on to the important subject of our last Happy Hour when we were very fortunate to have Cheryl Richardson, Head of the Royal Marsden MRI Scanning Team (MRI Clinical Lead) with us. Cheryl talked to us about the subject many of us will recognise as “scanxiety”, how she and her team try to help and how we can help them understand our issues and respond to help us cope. On this point she said that, when Paul was going through his scans, and got in touch to discuss how he could cope with the claustrophobia of MRI scanners in particular, it actually changed how she and her team managed patients.
She began, though, with an update on some of the fantastic facilities being developed at the Royal Marsden and gave us a tour around different types of scans, telling us that as patients, we would all have a picture taken by her department. She also told us that she rarely meets clinicians! For her and her team a clinician is usually only a signature on a form – so our little forum has allowed her to meet with patients and clinicians at the same time – we were fortunate to also have Dr Browning join us on the 2nd June.
If you would like to refresh your memories of what we heard from Cheryl, or if you missed it, please go to https://redtrouserday.com/scanxiety-something-that-affects-20-of-patients/ – it really is so worth spending the time to listen to this if you and / or loved ones are going through a diagnosis or treatment process at the moment. I really do wish I had understood all this long ago.
A quick round up of what else we discussed on the 2nd June:
With Dr Browning joining us, we get a regular update on one of the important projects RTD is funding – the mASCARA project. We heard that, as well another paper being published that week by the mASCARA team, our registry continues its international journey, with a new centre in Vancouver signing up. NHS England meanwhile is still taking it slowly! Because of the pandemic, it turns out that they have been let off reporting in! Oh well, how many times do we create and begin something in the UK for the rest of the world to take forward and benefit? At least with this one, whether or not NHS England signs up, Dr Browning and her colleagues over here are getting the benefit from the increase in data captured on the registry.
A little on other research
We heard that, with Professor Brown pushing hard on using radiology ever earlier in the diagnosis process and as a treatment option, this form of intervention is more often being used instead of surgery. In fact there is now a much larger range of therapies to choose from with much faster recovery times.
From the front line
The sad news is that there appears to be a massive increase in Colorectal Cancer in the young, being detected at both an early and advanced stage. Dr Browning speculated that it could be to do with diet. This is when I wish I could get the world to listen to Dr Kontovounisios’s presentation on Diverticulitis and how a good diet can avoid it, alleviate it, and even stop it from becoming cancerous. It would also be worth listening again to the Nutritionist, Giovanni Ognio, who spoke to us during our Happy Hour on the 5th May. Links to these all on our website.
It is no surprise then, to hear that Dr Kontovounisios is operating through the night to get through the ever growing lists, now that more people are coming forward as the pandemic restrictions are being eased.
And comment on the Central Database for patient data the Government is proposing
Our clinicians told us that, for them, a central database making up to date, consolidated patient data available will help them a lot and avoid a lot of delays that happen now. However, they recognise that patients may feel a little restricted if they think that everything they say will be captured and used in ways they are not aware of. So this debate will continue, I think.
Next Happy Hour:
Hope you enjoyed reading the summary of our last Happy Hour and that you will come to our next one, in less than a week’s time, on the 7th of July.
We plan to continue with the subject of “Scanxiety” but this time with a focus on how to cope emotionally and psychologically. We hope to have a wellbeing and leadership development specialist, who is herself a bowel cancer survivor, to lead us.