BRIAN’S LUCKY JOURNEY - Part 1 - Part 2 Here
Why ‘Lucky’? Well, if I had not been out shopping, which is a once in ten-year event for me, I would probably have advanced prostate cancer by now, with bone secondaries, and still no outward signs or symptoms of cancer.
My journey started one Saturday afternoon in October 2016, whilst I was shopping in Burgess Hill for my wife, Karen’s, ruby wedding anniversary present. The Lions, in conjunction with PCaSO, were holding a PSA testing day in the Martlets Hall in the centre of town. Over the last ten years my GP had repeatedly advised me against having a PSA test as I apparently had no “symptoms”, and so I decided on the spur of the moment that this was an ideal opportunity to take the test for myself. It was a simple blood sample taken by phlebotomists from a local hospital.
Unfortunately, the test result sent back to me by post was RED, indicating a slightly high PSA of 5.48. I was somewhat surprised and so, rather than trouble the GP with what I imagined could have been a distorted test, I had another test done by PCaSO a few weeks later, yielding a further RED score. At this point I was more concerned, and went to see a GP, not my usual one, who immediately put me on the fast track appointment system at the Royal Sussex County Hospital, Brighton.
At all times I kept my immediate family informed of progress, following the initial GP referral. I am fortunate in having a daughter who is an oncologist registrar, albeit in another region, who has some knowledge and contacts in the field, and has helped my understanding of the procedures and given me extra support.
Maintaining fitness levels and a positive attitude to the outcome is essential, I feel. As is gaining as much knowledge as possible of prostate cancer via the various websites, the main ones I’ve used being PCaSO, Macmillan and Prostate Cancer UK.
Karen’s research showed that I would have more chance of a successful long-term outlook if a healthy diet were followed. Whilst we had always followed a healthy diet, more specific changes were made, including cutting out all meat that had been processed, for example bacon, ham, mass-produced sausages, and pies; and red meat (pork, beef and lamb, amongst others), as there appeared to be strong evidence that these could be unhelpful, if not harmful, to prostate cancer sufferers. At the same time, we’ve eaten lots more broccoli, cauliflower and green, leafy vegetables, tomatoes, turmeric and pomegranates or pomegranate juice, as research shows that these could all be beneficial. If my long-term survival could be helped by such changes, we felt that these relatively minor alterations to our diet were a small price to pay.
After confirmation of the diagnosis, all other members of the family and friends were told of my problem, resulting in much encouragement and hearing about their friends and acquaintances that had had PC and been successfully treated.
Karen and I straight away volunteered to help at PCaSO PSA testing events and, coincidentally, back at the Martlets Hall for our first event as volunteers, a year to the day of my own first test, we met another chap called Brian, who had also been tested on the same day as me by PCaSO the previous year. This meeting turned out to be fortuitous, as Brian was following the same treatment path as me, but was a few weeks ahead, and thus we were able to compare notes and commiserate on side effects and treatment. Subsequently I have volunteered to take on the role of Gift Aid Coordinator for PCaSO, allowing me to give more back in the pursuit of helping more men like me, that may have PC without having any symptoms.
Once the preliminary, pre-radiotherapy, hormone treatment was started, the main side effect was hot sweats, resulting in poor sleep, and increased frequency to wake at night for a pee – sometimes hourly. At this point Karen had seen the Horizon Centre at the Royal Sussex County Hospital in Brighton, and the complementary treatments being offered there, so I called in on the off chance. Firstly, I was shown around the Centre by a volunteer, to see the excellent facilities and very calm environment, perfect for a relaxing coffee whilst browsing the huge amount of literature available on all sorts of issues affecting cancer sufferers. I also had the good fortune to be introduced to Michaela.
Michaela suggested that I tried acupuncture for the hot sweats, and duly booked me in for a session with Jane. Within days the treatment had had an effect, reducing the sweats, and resulting in much better sleep. Treatment continued throughout the following months at regular intervals, and was a great success. I also had a couple of massage sessions for muscular pains and strains caused during the course of my efforts to maintain fitness, and again these were successful, and enabled me to continue with my active lifestyle.
Albion in the Community use and support the Horizon Centre in offering health and fitness training for those in Brighton. As I live in Mid Sussex, I was offered ‘Move More’, which is another programme to encourage health and fitness activities. This I found to be too easy – I am used to lots of off-road cycling on the South Downs, and it was this level that I wanted to achieve once again. However, it was good to meet at regular intervals with one of their experienced trainers for motivation.
I noticed that AITC were running a Men’s Health Cancer Prevention Day and decided to go along. There I took up the offer of a full body check for skin cancer. Fortunately, other than the normal sun damage expected from a misspent youth playing outdoors, all was fine, which was very reassuring. I also met the PCUK volunteer who attends such events advising men on the possible prostate cancer symptoms. I have offered my details to AITC as a future volunteer for such events.
On a number of occasions we used the excellent café at the Horizon Centre, and I was able to meet up with a friend who was also post-brachytherapy treatment. It’s a good place to catch up with others, and for good food and coffee, where everything is based on a donation system, contributing towards the Centre funding. Regular catch up chats with Michaela on my visits ensured continued motivation and advice, which was most helpful.
The morning after my HDR brachytherapy treatment, I headed from my hospital bed to the Horizon Centre to meet Karen, and found a wonderful almond croissant and coffee waiting for me - the perfect treatment, brilliant!
During one visit to the Horizon, I noticed a poster for a Nordic walking course, which, as I am a keen walker, I thought could further improve my overall fitness and arm strength. This has proved to be the case, and will now be another great means of exercising outside in the fresh air.
Soon after completion of my course of treatment, my GP referred me to the Triangle Leisure Centre in Burgess Hill for three months. On meeting my personal trainer I was given a course of light weight and cardio exercises, followed by swimming in the health suite, and sessions in the steam room and sauna. This has made a huge difference to my strength and overall fitness. The weather has so far not encouraged any long-distance off-road cycling, so using the gym regularly has been the perfect means of getting exercise.
Post-treatment, I have now volunteered to take part in a clinical trial called Add-Aspirin, which will mean regular trips to the hospital and enable me to pop in to the Horizon for more relaxing coffee and catch ups.
Throughout my treatment the NHS system has been faultless, there were no cancellations, and staff were very professional and caring at every step of the way. I’ve had a lucky journey!
Here is a summary of the journey so far:-
8th October 2016
First Test 5.48
Test 2, 5.15
GP referral by Dr T Lynch
Mr Cheema, Urology - DRE - small, smooth, benign-feeling prostate
25th April 2017
Four month review after PSA test - Dr Bratkas. Test 3, 6.94
MRI Pelvis with contrast
Ultrasound -guided biopsy - Dr Johnathon Richenberg
Mr Andrew Symes confirmed PC, and the team offered my choice of radical prostatectomy or HDR brachytherapy
Consultation - Mr Stephen Garnett, discuss radical prostatectomy
Contacted PcaSO. Inspiring comment from Roger Bacon – “it’s treatable and beatable”. Discussed different experiences with other PCaSO members.
Consultation - Dr Angus Robinson, discuss HDR brachytherapy, etc
I decided to follow the HDR brachytherapy treatment path
Pre-treatment baseline PSA test 11.15 Begin hormone tablets
First Zoladex (hormone therapy) injection. Joined PcaSO
Began Horizon Centre complementary therapies
Pre-radiotherapy baseline PSA test 0.87
Consultation - Dr Robinson
CT radiotherapy planning scan
Final Zoladex hormone injection
First ‘enemy’ (enema!) and first of 15 days of daily external beam radiotherapy treatment
10th January 2018
Final enemy! And final radiotherapy
Post treatment PSA test 1.33 (slightly higher, expected at this stage)
Consultation - Dr Robinson.
Now in remission
14th January 2019
Next appointment due
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