Oxfordshire Prostate Cancer Support Group
Newsletter August 2016
FORTHCOMING GROUP MEETINGS
Monday 12 September at 6.30 for 7.00, Oxford Golf Club, Hilltop Road – wives and partners especially welcome: Mary Mountford-Lister from Macmillan Cancer Care will speak about Macmillan with a focus on the role and impact on wives and partners in supporting men affected by prostate cancer. Please come along to hear and to discuss, and as always, bring a raffle prize if you can.
Monday 17 October: Amanda Holdstock from Coloplast will talk about incontinence issues and the use of the “alternative to pads” Conveen Sheaths.
Saturday 10 December: skittles evening.
OPCSG MAKES A MAJOR DONATION TO IMPROVE PATIENT TREATMENT AT THE CHURCHILL
We are proud to announce that very strong fundraising (see below) has enabled your Committee to authorise a major donation for the benefit of men who need a biopsy as part of their diagnosis procedure. The Biojet ultrasound system for taking MRI fusion prostate biopsies is a less intrusive form of biopsy that is to be introduced at the Churchill Hospital. The fusion kit enables accurate biopsy targeting of MRI lesions. This should reduce the number of biopsies required and definitely reduce the chance of a patient requiring a repeat biopsy after a first negative. OPCSG has donated £7614 to cover the cost of the powered patient trolley that is required in the Urology Outpatients biopsy room in order to mount the Biojet ultrasound system for taking MRI fusion prostate biopsies.
We have heard many men talk about the discomfort and sometimes negative side effects of biopsies, and we believe that it is an appropriate use of OPCSG funds to help to enable the hospital to introduce the more advanced and less intrusive biopsy procedure. We are sure that future patients will benefit greatly from this.
NATIONAL CANCER REGISTRATION SERVICE – INFORMATION AND SURVEY
Did you know that if you have been diagnosed with cancer, the medical staff looking after your health will pass information about you to the National Cancer Registration Service? This will include your name, address, age, gender and date of birth, as well as information about the type of cancer you have and your treatment. The Registration Service has the government’s permission to collect this information, which is used confidentially to keep track of how many people are getting which types of cancer and to evaluate and improve services.
Macmillan Cancer Support and Cancer Research UK are reviewing how cancer patients in England could be better informed about the use of their data in cancer registration. In order to do this, they first need to know more about what people living with cancer think about the cancer registry – how aware they are about it at the moment, what they would like to know, and when and how they think it would be best for them to receive this information. So they have developed this survey: https://www.surveymonkey.co.uk/r/cancer-registration and would like to get the views of as many cancer patients as possible. They invite you to complete the survey so that the voices of cancer patients can be heard. Please participate if you can.
HIFU TREATMENT: REPORT
OPCSG committee member Martin Graves offers this update on the HIFU (high intensity frequency ultrasound) treatment he recently received at University College London Hospital:
He went into treatment at 8.30 and was back on the ward at 11.30. He experienced no pain other than that uncomfortable feeling from the catheter and raw throat from the tubes and being intubated. The catheter had to stay in a bit longer than the predicted six days but he continued to be pain free. Martin has nothing but praise for the team at the UCLH and the treatment. HIFU is not yet available in Oxford but Martin strongly suggests everyone considers this as a treatment option if they are eligible, especially younger men. Although HIFU treatment leaves the prostate in place, there is evidence of little or no side effects in most cases, with implications for quality of life. Martin is happy to talk to anyone who needs further information about HIFU.
FUNDRAISING AND THANK YOUS
We should like to express our sincere thanks to all the following who in various ways have contributed considerable sums to our on-going fundraising efforts: Witney Rotary Club; Bernard de Petrucci and the staff of The Lord Kitchener at Curbridge; Thomas Cook; the organisers of Wallingford Vehicle Rally and Parade; David Duckham and The Sportsmen’s Dinner; Alfred Lodge of the Masons; and all who sponsored me for The Chairman’s Walk: I completed the walk from my present home in Oxford to my childhood home in Somerset, approximately 130 miles as mentioned in the June Newsletter, on 3 July. I have been overwhelmed by the generosity of friends and supporters in answer to this appeal, and at the time of writing the total raised including Gift Aid stands at £996. If anyone would like to push it over the thousand pound mark, the sponsorship page at https://mydonate.bt.com/fundraisers/johngrundy1 is still open. Enormous thanks to all who have donated. I have written a brief account of the walk which I’d be happy to email to you on request.
MAGGIE’S CULTURE CRAWL
This sounds really intriguing! The Oxford Maggie’s Centre, where so many of us have been made to feel welcome, writes as follows: “Come with us as we head out into the night on Friday 23 September and help us raise funds to support people living with cancer. Maggie’s Culture Crawl is an 8 mile part night-walk, part cultural adventure. You’ll get exclusive access to unique buildings, encounter talented performers and enjoy delicious food and drink along the way.” Places are limited, so sign up today at www.maggiescentres.org/ccoxford. I’ll be away so can’t join in, but I’d love to hear from anyone who does.
HEALTH IMPROVEMENT ADVICE CENTRE
Situated in Blue Outpatients on Level 2, John Radcliffe Hospital, the Health Improvement and Advice Centre is open for drop-in information and advice on healthy living and how to reduce your risk of ill health. It’s open Monday to Friday during office hours and can be contacted via hereforhealth@ouh.nhs.uk.
AWARENESS EVENTS THIS YEAR – COME AND HAVE A DAY OUT HELPING OPCSG
Can you spare an afternoon or a few hours to help us handing out leaflets, talking to passers-by, and enjoying an event? OPCSG will be at the following events this summer. If you can spare some time, please contact John Goldsmith on 01865 580152. You get free entry to any of these events, and time to enjoy the show while you are there.
28 August – White Horse Show, Uffington; 25 September – Distinguished Gentleman’s Ride at the Victoria Arms, Marston; Sunday 2 October – Banbury Boat day.
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