You can read some of our patient stories below. You can watch videos of other patient stories at the Making Research Better and health talk websites. The INVOLVE website also features an animated video showing an example of public involvement in research.
When self-employed roofer and proud grandad Ken Bashford received an email from Prostate Cancer UK inviting him to take part in local celebrity Jeff Stelling’s latest marathon effort to fight the disease, he was “over the moon”.
It was a much-welcomed high point in what has been a rollercoaster ride for the 60-year-old, from Marske, since being diagnosed with prostate cancer himself following a simple blood test in May 2015.
Ken, who is still undergoing treatment for “incurable but containable” prostate cancer, and taking part in a clinical trial called Stampede, met the Sky Soccer Saturday presenter last year, during the first day of the 2016 March for Men, as Stelling walked 10 marathons in 10 days.
Despite feeling tired and unwell due to the effects of his treatment that day, Ken “dragged himself out of bed” in the hope of catching a glimpse of the star - and possibly getting the chance to say thanks for his help in supporting men like him.
But he was delighted when Gary Haines of Prostate Cancer UK invited him to accompany the down-to-earth Hartlepudlian from Marske Square to his beloved Marske United FC – and when Jeff himself also took the time to find out more about his battle with the disease. Mr Haines also took Ken’s contact details, saying he would be in touch.
He was true to his word and Ken recently received an email inviting him to accompany Jeff and the team as they walk into Middlesbrough FC’s Riverside Stadium later this year.
Boro’s ground is one of 40 stadiums the presenter will visit between June 2 and June 16, as he ups his game to complete 15 marathons in 15 days this time around.
During the March For Men challenge, Jeff will head north from Exeter City FC to Newcastle United FC – a 400-mile walk from St James Park to St James’ Park.
Ken will join the walkers on the penultimate day, Thursday 15 June, as Stelling sets off from Darlington and heads back to hometown club Hartlepool United, via the Riverside.
Ken explained: “They said it “would be an honour” if I’d walk with them again – I’ll never forget those words.
“When I met Jeff last year and thanked him for all he does to raise awareness of Prostate Cancer and funds, he said: “No, thank you. It’s men like you who we do it for.”
“He was so genuine and took time out to find out about me and what I was going through.”
As well as supporting the local celebrity on his epic march this year, Ken, who is undergoing treatment at The James Cook University Hospital in Middlesbrough, is also hoping his honest and touching account of his battle with the disease will encourage more men to look out for any signs, be aware of risks and share any concerns or unusual symptoms with their GP straight away.
Proud Ken, who has built up a reputable roofing company over a career spanning almost thirty years, openly admits to breaking down in tears in front of wife, Elaine, 57, and sons Dan, 23, and Andrew, 20, at various points during his “journey”.
He talks candidly about the “excruciating pain” and “embarrassment” of some of the procedures he has had to endure along the way - and the fact that his “love life was gone almost overnight” once treatment started.
But despite all of this, his positive attitude and the gratitude he feels towards his loved ones, close friends and hospital staff - not to mention Brady his beloved dog - shines through.
Ken, who was diagnosed after asking his GP for a PSA blood test due to the death of his brother from cancer, said: “I take my dog out for a walk along the seafront and we stop and look out to sea along the cliffs. I say to my dog: “It’s lovely this, isn’t it? I’m not giving this up”.
“Anybody who hears me must think I’m mad! But it’s in those moments I realise I have so much to live for.
“I have a wonderful family and I’ve learned since I was diagnosed that you have to fight this prostate cancer all the time. When it knocks you down, you have to get back up there or it will win!”
It is his beloved family whom Ken credits with helping him to stay so positive throughout his battle with the disease.
He describes wife Elaine as an “angel” and “bear hugs” from son Dan that have kept him going, as well as the support from son Andrew, their partners and Elaine’s sons Chris, Phil and Mike from a previous relationship.
“I will battle this Prostate Cancer for as long as I can for all of them,” says Ken, whose diagnosis came completely out of the blue after being given a clean bill of health from his GP following a number of routine tests for men of his age – what Ken describes as an “MOT”.
“I’d just passed my MOT and some X-Rays I had for a cough had come back fine, so I was buzzing!” said Ken.
“But I asked my doctor for the PSA test as well, as my brother died of a male cancer.
“I didn’t really know what it was, but I had heard little bits about it and thought I was getting to that age. I explained about my brother, and the doctor said he was happy for me to have the test, even though I had no symptoms at all.”
The Prostate Specific Antigen or PSA blood test is usually ordered by doctors when male patients present with potential symptoms of prostate problems like benign conditions such as infection, inflammation or enlarged prostate, as well as prostate cancer.
It measures levels of the protein PSA – with high levels indicating a potential problem.
When Ken’s GP received his PSA results from the hospital, they were noticeably high, meaning his GP had to perform the examination in surgery many men dread.
But for a few moments of embarrassment and discomfort, the GP was able to confirm “something didn’t feel right” - and there was a 50/50 chance it was cancer.
Ken said: “It was embarrassing and I think this kind of examination is a big taboo with men.
“But because I had that examination, I was able to be immediately referred to Dr Chadwick at James Cook Hospital.
“I walked the 100 yards from the surgery to my van in a daze and sat there for five minutes with my head across the steering wheel, thinking “this could be serious.”
Ken “can’t remember” the three-mile journey from his surgery to his home, but when he returned, his wife immediately knew he’d received bad news.
“She can read me like a book,” said Ken
“I told her, “they think I’ve got prostate cancer” and she dropped the two shopping bags she was carrying.
“Later, she reasoned there was a 50/50 chance, so I might not have cancer at all.”
Ten days later, the same examination was performed at hospital and Ken was referred for CT and bone scans and a biopsy.
Ken also went through “one of the most painful experiences of his life” when a biopsy was performed.
The need for this procedure is now, thankfully, being reduced, as MRI scans are now being used at James Cook as a first line following an abnormal PSA test.
But at the time, the biopsy, despite being painful, at least swiftly confirmed the diagnosis of prostate cancer – and ensured Ken’s treatment could begin as quickly as possible.
“I was terrified when I had to go back for the results a week later,” admits Ken.
“Elaine and my two lads were with me and I didn’t want to go through that door that said “Oncology”.
“All three of them got me through that door, which means a lot to me.
“I stopped in my tracks, my eldest lad Dan said, “If you don’t go through there, you don’t know if you’ve got it or not. You could be worrying about nothing, or if you’ve got it, you can get treated”.
Already shaking as Dr Chadwick opened his file, Ken admits his bottom lip started trembling as he was told he had aggressive prostate cancer and it couldn’t be cured.
However, Dr Chadwick said it could be contained with medication that needed to start straight away.
Ken began injections of Degarelix hormone therapy in his stomach immediately.
The injections caused his stomach to swell “like a rugby ball” and caused pain and tiredness – but the treatment worked, as his PSA levels gradually came down.
He was then offered the opportunity to go on the National Institute for Health Research (NIHR) supported Stampede trial, which involved taking hormone medication every day, as well as the monthly injection.
He agreed and says he feels reassured by being so closely monitored as part of the clinical trial.
“The way I look at it is that this could help provide a cure for patients in future,” he said.
“Every morning I get up and take four Abiraterone Acetate tablets, followed by 160mg of Enzalutamide after breakfast – and a steroid tablet every day.
“Once a month, I get my bloods taken at my GP and they check everything. I contact the hospital 36 hours later for my results, especially my PSA.”
Due to the pain and fatigue caused by the monthly injection, Ken was also able to move onto an alternative treatment of a three-monthly implant.
He had come to dread the monthly injection due to the side effects, despite acknowledging it was literally keeping him alive.
“I felt my quality of life was getting low so in December 2015, me, Elaine and Dr Van Der Voet made a big decision to switch to the implant to see if it could keep my PSA levels down just as effectively, without the side effects,” said Ken.
“For 15 to 20 seconds every three months, having the implant really hurts, but now I have no side effects like a painful, swollen stomach - and most importantly, the implant is still keeping my PSA levels low.
“I get tired several days before and after having my implant, but a power nap helps!”
Since starting on the implant, Ken has also gained invaluable support from a local Prostate Cancer support group which meets on the last Monday of each month at the Jack Hatfield Centre in Acklam at 6.30pm.
By chance, he also met another Prostate Cancer sufferer on exactly the same treatment regime as him, when shopping for Prostate Cancer T-Shirts on Facebook.
Ken, who also underwent successful radiotherapy treatment for a cancer spot on a rib in October last year, says: “I met Alan in person for the first time just before Christmas in Harrogate. We got on brilliantly, as did both our wives and intend to meet up again very soon.”
December was a happy time all round for Ken, who enjoyed a brilliant family Christmas, the celebration of his sixth wedding anniversary, turning 60 and his wife’s birthday.
In January 2017, his PSA test remained low and he enjoyed a trip to Dubai and a cruise to celebrate all the recent happy family events.
He is now looking forward to meeting Jeff again in June with renewed optimism for the future.
In the meantime, his two grandsons and the rest of the family remain “an inspiration”.
“Harry, who is six, will now pick up the phone and ask “are you all right grandad?” and I regularly get pictures of Nathaniel who is two-and-a-half sent to me by his mum,” said Ken.
“I have nothing but thanks for my amazing family, Mr Chadwick and his staff, Prostate Cancer Nurse Patricia McClurey, Dr Van Der Voet and his wonderful nurses who are so kind and helpful, his trial assistants Lisa and Lynne who are only ever a phone call away, Dr Fish, my GP and practice nurse Anthea. Without these people I couldn’t do it.
“I want to encourage any men who might be worried about any symptoms they might have, or think they might need a PSA test to go to their GP without delay and ask.
“My fight goes on and if sharing my story helps one other person, I will be extremely happy.”
To sign up for the March for Men or to find out more, visit www.prostatecanceruk.org/jeffsmarch
Shannon Barstow, a 20-year-old dancer, from Ormesby, also benefitted from a clinical trial to correct a hip problem.
After developing pain in her hip, the Teesside University student feared she may have inherited a condition called hip dysplasia from her mum – something which could have seriously hampered her chances of pursuing the career of her dreams.
But after being diagnosed with hip impingement – an abnormal shape of the hip – she was offered the chance to benefit from a clinical trial comparing two different types of treatment – surgery or exercise.
Shannon was selected for the surgical treatment route, and underwent a day case procedure at The James Cook University Hospital last May.
Despite the setback from her condition and surgery, Shannon was part of a team on her course which set up Diverse @ Tees, promoting dance in secondary schools and amongst children with learning disabilities.
And now, thanks to the surgery, she can dance pain free once again.
“Since being discharged from the clinical trial I have participated in a range of dance classes, pain free, gaining confidence within my dance ability,” she said.
“I can now look forward to a career in the arts.”
Retired teacher, devoted dad and husband Edward Sparshott, 65, was among the 2,500 patients who began receiving treatment as part of a clinical trial last year.
Edward, of Masham, near Bedale, was diagnosed with bladder cancer two years ago, after being referred to The Friarage Hospital in Northallerton by his doctor when he noticed changes in his urine.
He was told the cancer was not invasive or “dangerous”, but the growths in his bladder would need to be surgically removed.
Following the surgery, he underwent regular screening and, much to his relief, the first two results came back all clear.
But when he was screened a third time, Edward was told the growths had returned and he would now need chemotherapy to treat these.
It was then he learned he was suitable to take part in a clinical trial known as HIVEC II, to determine whether “hot” or “cold” chemotherapy is most effective – and didn’t hesitate to sign up.
“I came to The James Cook University Hospital for a morning and saw a specialist nurse, the research nurse who was overseeing the trial and my specialist Jo Cresswell,” he said.
“They explained very carefully what had happened to me and what needed to be done about it. I came away full of knowledge and also full of excitement as well.
“While taking part in the clinical trial, I feel that I’m being monitored carefully which is very reassuring.
“They explained the nature of what they were doing so well, with some patients on the trial selected at random to receive chemotherapy that was hot and others treated with cold chemotherapy – and I turned out to be in the “cold” category.”
Edward explained that being involved in the trial made him feel positive and gave him a sense of purpose after learning his cancer had returned.
He said: “It’s so easy when the C-word is mentioned to sit around and feel sorry for yourself; and I suppose everyone is shocked to start with and feels a little bit like that.
“But it’s so exciting to be engaged in something where you feel, not only that it’s going to do you some good – but that you’re also generally helping and making a contribution, rather than sitting around moping.
“That’s what I found particularly exciting about it – and still do.”
Martin Jewkes of Croft near Darlington took up the opportunity to be part of a Radiotherapy trial which resulted in South Tees being the first hospital in the North of England to recruit a suitable patient to the Prostate Advances in Comparative Evidence (PACE) trial for prostate cancer.
Martin said: “When I was diagnosed, I really didn’t fancy having a surgical operation so I did a little research on the internet and came across information about the PACE trial. I contacted Dr Hans van der Voet, a consultant oncologist at The James Cook University Hospital, and he checked with the Royal Marsden Hospital and the Institute for Cancer Research who are running the trial to see that I matched the strict criteria. I did and underwent only five sessions over a ten-day period, rather than the usual 39 sessions for the same dosage.
“I’d encourage others who meet the criteria to go on the trial. Although it sounds strange, I had a good experience and hope that whatever the results conclude I’ve played a part in making it easier to treat prostate cancer. The staff were fantastic and extremely supportive throughout the process.”
Keith Taylor, 65, an educational consultant from Bishop Auckland has just signed up for his third clinical trial – a study to help prevent future complications in coronary heart disease. He has previously taken part in a cholesterol study and also supported research into the effect of low doses of radiation on surgeons’ eyes. Here he shares his experiences in his own words…
“There are many reasons why trials are undertaken and my lack of medical knowledge means that I am blissfully unaware of many of them. What I do know is that without such trials taking place the likelihood of me still being around would be statistically lowered. Other people have previously taken part in such trials and have therefore enabled me to live a better quality life than I would have done otherwise.
So, I have more tablets to take, I rattle a little more each morning! It is a pain taking extra tablets every day but I know that it is for a good reason and one that I can subscribe to.
I have to regularly travel a 60 mile round trip to The James Cook University Hospital. I am not keen on the traffic through Middlesbrough but get a lovely welcome when I get there! I can also discuss any issues or problems that I perceive with my own health and seek advice and support whilst I am there. There’s a bonus!
I was immensely grateful to the staff for their explanation of why the trial was taking place and possible outcomes of the research. Making it real and important is a vital ingredient of managing the process. Putting it into perspective was a spur to being committed to supporting the trial.
I haven’t found the trial a major issue but it is certain that you have to take it seriously in order that the results from the trial are valid. I, therefore, do my utmost to stick to the regime suggested and log any variations.
It can cause some additional issues with holidays and variations to daily schedules but these can be catered for with preparation and planning. Again, you need to be determined to ensure that the results obtained from the trial are not affected by negligence on your part. It is difficult but problems are not normally insurmountable.
I am semi-retired and therefore do not find the involvement in a clinical trial particularly difficult. I can see that there could be more issues were I working full time.
This is the third trial that I have been involved with and all have been interesting and worthwhile. I look forward to one every five years for the next 30 years or so…but maybe that’s optimistic!”
As a fit and healthy 45 year old male who was a very active five a side football player I found myself struggling a little bit running around the football pitch. For several years I had been taking medication for mild Asthma as it was suspected that this was the cause of my breathlessness.
MAVRIC trial – traditional operation
It came as a shock when during a routine examination my doctor informed my that I had a heart murmur. With no family history of heart issues and being told to stop all sport until further tests were done this was a worrying time.
Upon diagnosis it was found that I has a bicuspid aortic valve which needed to be replaced as it was in a state of severe stenosis.
I was told that I needed the operation sooner rather than later and was given a date only weeks after diagnosis. It was at this point where I consulted ‘Dr Google’ and scared myself with various horror stories from the internet.
Upon meeting consultant Dr Stewart he explained that I could take part in a trial which was pioneering a minimal invasive technique which involved a smaller incision along my chest. Together with other potential benefits such as less intrusion along my sternum and a lower risk of bleeding during the operation.
I elected to take part in the trial as I had comfort in knowing that the medical team around me were supportive and the Surgeon Mr Goodwin was very experienced. It was also explained that I had a 50/50 chance of receiving the minimal surgery compared to the traditional operation.
Knowing that it was a gamble as to which operation would be performed I was none the wiser after waking up following the procedure. A very long bandage disguised any clues, the research team asked me various questions whilst I was in this state only to reveal days later that I had undergone the traditional operation.
Following the operation the care I received on the ward was first class with several visits from the clinical research team providing constant support and reassurance. I was only in hospital for five days and upon release still had contact with the research team. Who were able to answer any questions about various post operation issues.
I would encourage other patients to take part in similar trials judging on the positive experiences I have had.
Four months later I am now back playing football and getting back to normal swing of things thanks to the care, skill and professionalism of all those involved.
MAVRIC trial – keyhole surgery
I had been developing the heart condition (aortic stenosis) over a period of years but I first became aware of it in November 2013. I was on holiday in Spain, staying in a very hilly area. I walked up one of the hills and found it difficult to get my breath. At the time I put it down to being slightly overweight and just getting older, but when I returned home the same thing happened on a smaller incline so I immediately went to the doctors to get it checked out.
I was told about the trial when I went to The James Cook University Hospital for the information day. I was told about the whole process I would go through along with the opportunity to take part in the clinical trial. This gave my wife and I time to discuss our thoughts about being part of the trial. Although in reality the idea of not taking part never entered my head.
The way I was treated, this time from my own doctors, the Queen Elizabeth Hospital where I went for the angiogram and finally to the James Cook for surgery, was excellent. I was supported throughout and probably more importantly for me I was informed at all times of what was happening and what would be happening and the effects I could expect it to have.
Everyone at the James Cook treated me as an individual and with respect. I never at any time just felt like a number. Heather and Jon were totally supportive helpful and informative throughout.
I think in my experience, the fact that I had the less intrusive process helped me with my recovery. I would say that I have been positive about the process but I definitely think this was a big factor in my quick recovery. Patients who had not been given this opportunity seemed to struggle more in the first few days after surgery both mentally and physically.
The only issue I had throughout the whole process was that I had my operation postponed twice. This in no way detracted from the wonderful treatment I received as I am aware that the operation scheduling was out of the hospital’s control. Thank you to everyone who looked after me and put me back on the road to full health.
Trialling new medication
Research and development is obviously a very important constituent in the improvement of medical treatment and knowledge.
I was notified that my particular health state satisfied the criteria for testing some new medication. I had no hesitation in helping with this and was very impressed with the whole procedure.
Lots of information was sent to me at the beginning of the trials, so that I knew exactly what the test was for, how it would be carried out and when I would need to visit the research team.
The team at The James Cook University Hospital, Middlesbrough, were helpful, professional and very friendly. It was always a pleasure to attend the update sessions.
My health history was well documented, my ongoing health was meticulously monitored and I was always put at ease with the whole situation.
I would recommend anyone to help with medical trials as the whole experience was satisfying and rewarding. Many thanks and best wishes to the James Cook research team