Oxfordshire Prostate Cancer Support Group
Newsletter January 2016
GROUP MEETING MONDAY 25 JANUARY – DIET AND PROSTATE CANCER
At last the session on diet that has been requested by a number of members. This is always a difficult area where people hold strong views. Our speaker Caroline Hockley is a nutritional therapist who currently works in both Maggie’s Oxford and Cheltenham centres. She offers nutritional advice and recipe ideas through her group workshops, and says that the food you eat is vitally important to your overall health and wellbeing. If you have specific questions you would like to put to Caroline, please send them to me in advance.
Monday 25 January, 18.30 for 19.00, Oxford Golf Club, Hilltop Road. Please bring a raffle prize if you can.
SEASON’S GREETINGS FROM DOWN UNDER
Among the good wishes exchanged at this time of year came the following message from Roy and Helen Francis, Founders/Convenors - Mornington Peninsula Prostate Support Group (Victoria, Australia):
To all of those at the Oxfordshire Prostate Cancer Support Group - We wish you a very MERRY CHRISTMAS and a HAPPY & HEALTHY 2016 - from Helen & myself, and all of the members. Our group here in Mornington is the largest in Victoria with a membership of 211, and continuing to grow (as the population ages - and they find the benefits of living in this Mornington Peninsula part of Victoria!). You may find of interest that the temperature at home here in the last few days hit 43.4C, with a minimum of 28C overnight! At times like this, I do miss the taking of the children to school in the snow! ** (Well, maybe not - as the beach is only 5 minutes away!)
** Roy lived at one time in the UK. Of course we returned fraternal greetings to Mornington and assured them that snow at Christmas seems to be a thing of the past even here.
MESSAGE FROM ‘TACKLE’, THE FEDERATION OF PROSTATE CANCER SUPPORT GROUPS
We have received the following request for help from Tackle:
“NICE are looking for patients who have received the following procedure:
Injecting a biodegradable hydrogel into the perirectal space to localise prostate cancer irradiation IP1316.
They are being asked to carry out a review of this procedure and are looking for patients who have had it to help the evaluation process.”
If anybody has experience of this and is willing to help, please would you get in touch with Hugh Gunn at Tackle, hugh.gunn@tackleprostate.org.
URGENT ACCESS TO TOILETS WHEN YOU ARE OUT AND ABOUT – THE ICELAND EXPERIENCE
Are you one of those men unfortunate enough to need sudden, urgent access to toilet facilities when, for example, out shopping or travelling? Have you any experience of asking to use facilities in shops, cafés or restaurants when you are perhaps not a customer there? One OPCSG member recently had a bad experience at Iceland in Didcot when he was refused use of the staff toilets. Iceland told him that it is company policy to refuse customers access to staff toilets ‘because of health and safety’. I have written to Iceland on behalf of OPCSG to ask for clarification and a change of policy. At the time of writing I have not yet received their reply.
Have you had any positive or negative experiences in these circumstances? Please share them with us. And don’t forget that we can supply an ‘Urgent’ card to show in shops etc. explaining your medical condition if you would find it useful.
ED TREATMENTS UPDATE
In a recent Newsletter we published a personal story of one man's journey to treatment for erectile dysfunction. We have received a very useful update on available treatments from the Lead Urology Nurse Specialist at the Churchill Hospital. You can read her comments on injection therapy on our website at http://www.opcsg.org/news/erectile-dysfunction-%E2%80%93-updated-news-treatments-urology-nurse-specialist.
Thanks to Beverley Manning for thus useful information.
GIVING FEEDBACK ON HOSPITAL TREATMENT
When I recently completed a course of radiotherapy I wanted to let the managers at the Churchill know how brilliant their staff had been throughout the treatment. I did so by emailing the Oxford University Hospitals NHS Foundation Trust on feedback@ouh.nhs.uk. They passed my comments on to the frontline staff. Many of us value the work of NHS staff under pressure. If you have had positive experiences of treatment (or indeed negative ones), the Trust really does appreciate your comments, and positive words give a real boost to staff.
LEARNING YOUR PSA SCORE AFTER A BLOOD TEST
My surgery is using a new online Patient Access System. When I log on I can view my medical record, including test results. As a result I have been able to see my latest PSA score only 2 days after the test, a week before the oncology appointment. Does your surgery offer this facility? Ask them if you are not sure.
KEEPING YOUR GROUP RUNNING – DO YOUR BIT? (Repeated from the previous Newsletter)
An important figure in OPCSG will be stepping down at the AGM in March: George Goldsmith has been absolutely central to our success over five years, and it will soon be someone else’s turn to act as Secretary. We need new Committee members as well – so please start thinking now whether you can step forward to make a contribution, and talk to me or any Committee member if you want more information. Unless the Committee grows the group will falter. Without a Secretary it cannot function.
IS THERE ANYONE OUT THERE?
About every six weeks we send out this Newsletter by email to about 250 people and to a further 25 by post. Does anyone read it? I receive very little feedback and would like to know if it’s worth the effort. If you do read it, please drop me a line and tell me what you like/dislike about the Newsletters. Thanks.
DATES FOR YOUR DAIRY 2016
The committee have agreed the following dates for group meetings in 2016:
25 January, talk on diet by Caroline Hockley; 14 March AGM with Simon Brewster and Dr. Andrew Protheroe; 18 April quiz night with St. George theme; 20 June UCare; Sunday 26 June river cruise from Wallingford; 12 September Macmillan Cancer Care; 17 October tbc; 10 December skittles
If you no longer wish to receive this Newsletter please let me know on john@grundybell.demon.co.uk or 01865 730110. For news updates keep an eye on our website at www.opcsg.org.
John Grundy
Chairman, OPCSG
Feedback: Please let us know what you think about Newsletter articles. Any questions you would like to put to the speaker on diet on 25 January? Would you like to write a short article? Keep in touch!