For those of you (and there so many) who provide OCHRE with so much love and support, you know the challenges we face raising awareness of this awful disease and its life changing effects on the people it touches. We are always looking for new ways to tell the story of oesophageal cancer to help people better understand its symptoms so we can save more lives than we currently lose. There are few stories more powerful than this one, written by our great supporter Darren Johnstone. This is his extraordinary tribute to his beloved Dad, Peter. Before I tell you about my Dad's Battle with oesophageal cancer I would like to tell you who my Dad was before his diagnosis. My Dad was born in Scotland and lived there his entire life. When he was young he played for Hearts football team for a brief period before an injury meant he could no longer play. He turned to Darts and was exceptionally good at it. In 1998 he got to the quarter finals of the BDO world championship and his matches were regularly televised. He also led his country to a win at the WDF Europe Cup which was one of his proudest moments. He was a well-known man and was very well liked. He had a wife (Elizabeth), 4 children (Stacey, Steven, Darren and Peter) and 3 grandchildren (Steven, Mia and Kitt), he was so proud of them all. Before his battle began he kept good health and never really needed to go to the doctor. He had occasional heartburn which he treated with over the counter medicine as we assumed it was just normal because of what he ate and drank (If only we were more aware of the potential problems heartburn is associated with!) Let me begin my Dad's story a few months before diagnosis was made. Back in 2017 I used to come round to see my Mum and Dad after work. Every time I arrived my Dad's face would light up because he had someone else to tell about his plans for building my Mum and him their new home to see out their retirement days. He had already drawn the plans for the house, had the planning permissions and started to clear the land that he was going to build on, things were looking good. In October 2017 he was out at work, he was a joiner to trade so he was a very active man, kept extremely fit and this day was the same as any other day. He started work bright and early like every other day and worked hard until lunch time. He had his normal lunch, a couple of sandwiches which he was enjoying until he choked on a piece of the bread and really struggled to get it out. He finally managed to cough it up and thought nothing of it. When he came home he explained to my mum that he choked on a slice of bread and that he could still feel it in his throat. My Dad believed it was just some type of ulcer from coughing to hard. The feeling of something stuck in his throat subsided for a while but every so often would come back. We didn't see the warning signs. In December 2017 when all the family was round for Christmas, he would talk to us about how he kept feeling something in his throat and he struggled to eat his Christmas dinner. We said to him to go to the doctor and have it checked out, an ulcer is easy to fix we all said. He agreed to go to the doctor for the first time in ages as the feeling was more of a nuisance than anything else. As it was Christmas he had to wait until January 2018. On the 1st of January 2018 my sister brought her son into the world, another grandson for my Dad, it was an exciting time and 2018 was meant to be a good year. Later in the month my dad went to the doctor and they immediately referred him to have an endoscopy carried out to see if there was anything causing the discomfort in his throat. A few days later he was called back into the Hospital in Forth Valley to explain their findings. It’s cancer they said, they gave a brief explanation of it and told him someone would be in touch for the next steps. The news that he had cancer devastated all of the family, but we had hope, cancer is curable nowadays so we kept our fingers crossed. He was invited to the Beatson in Greater Glasgow where they discussed what type of cancer he had. He had oesophageal cancer stage 2/3 curable. His cancer was curable, the doctors explained that he would go through 3 months of chemotherapy and then they would perform an Ivor Lewis surgery to remove the remainder of the tumour. This was to take place in July as the tumour was completely contained, my Dad had so much hope that he would be cured. In March 2018 my dad started his chemotherapy for 3 months to shrink and continue to contain his tumour, he had hope and managed to maintain weight for the entire 3 months of his chemotherapy. During the time of chemotherapy my Dad had multiple appointments to talk him through the procedure and find out how he was doing. He had multiple scans and biopsies done, promises were made that things were going to get better. During his second round of chemotherapy he was struggling to breath and had to be taken into hospital. He was taken for a scan and there were spots on his lungs. We thought it had spread and were relieved to find out that although not ideal, the spots were in fact blood clots which had formed due to the cancer, these were easily cured with a stent and some blood thinners. The chemotherapy started up again to complete the next 2 sessions. In July 2018 my Dad was ready for his surgery. We had to go through to the Glasgow Royal hinfirmary the day before so that he could be prepared for surgery. It was a beautiful sunny day and we went out for a walk, we went to the local pub and watched some of the World Cup. My Dad said to me that he could not wait for this surgery to be over with and he would be on the mend, he was most looking forward to being able to eat a bacon roll without choking. We went back to the hospital and sat with my Dad who was nervous but also happy that he would be cured and on the mend. We left that evening and wished him good luck and that we would be back tomorrow after his operation. On the day of his operation we all waited to hear back from the hospital that my Dad was out of surgery. At around 3pm we received the phone call from the surgeon who was overseeing the operation. He started the phone call with saying “The operation did not go to plan, I'm sorry”. My mum quickly passed the phone to me as she could not handle hearing the bad news. The surgeon said “I'm sorry, we went in to remove the tumour however it has attached itself to the main valve to your Dad’s heart. It would be too dangerous to continue to operate, we have had to close him back up, surgery is no longer an option”. Absolutely devastated by the news my Mum and I rushed to the hospital. We were told my Dad had roughly 1 year left due to the fact they were unable to operate. My Dad was in intensive care and remained there for a week until he was fit enough to come home and deal with the news he had been given. In September 2018 after my Dad had healed up from his operation he was invited back through to the Beatson where they discussed his next options. They would use chemotherapy and radiotherapy together to try and shrink and contain the tumours which would hopefully prolong life. My Dad agreed to go for the treatment as he really wanted to live, he had so much more left to do in life and wanted to build his new home for my mum and him. He started his chemotherapy again and then moved onto his radiotherapy, he grew really weak during this time as the radiotherapy really took its toll on his body. He remained strong and powered through with the treatment. In December 2018 he struggled to manage his pain after having completed the radiotherapy and chemotherapy. We relied on help from Strathcarron hospice where he was admitted for 2 weeks to complete pain management. During his time in Strathcarron he was taken for his next scan to see if the treatment had worked and reduced his tumour. We patiently awaited the results of the scan. On Wednesday 19th of December, only 6 days before Christmas he was given his results. He was told the cancer had spread to his stomach, liver and kidneys and that the treatment was not successful. Unfortunately due to it being Christmas time we were unable to discuss the next steps until January. In January 2019 exactly 1 year after being diagnosed with curable oesophageal cancer stage 2/3 it had developed into Stage 4 Metastatic Adenocarcinoma of the Oesophagus. We were invited back to the Beatson to discuss the results from December 19th. The doctor said the one thing that no one ever wants to hear “There is nothing else we can do”. He was told to go home and be comfortable. The final month was not an easy one, it was hard enough to come to terms with losing someone so close to you, but we supported my Dad through it. He wanted to be at home so we arranged for this, we were supported by the nurses and my Mum looked after him full time. It was not an easy task for anyone to do but we managed it as it was his wish, on February 21st at 21:30 we were all around his bedside, his full family was there listening to his breathing and watching the man we loved slowly slip away. At 21:40 he took his last breath at the age of 57. This horrible disease that we had never even heard of in 2017 managed to take my Dad from us, at the start of 2018 my Dad was a strong, fit man with all his life ahead of him. At the beginning of 2019, only 1 year later, he was a shadow of his former self due to the way this disease acts. It restricts your eating and slowly makes you weaker. Because of this disease my Dad was not able to fulfil his dreams of building their new home for retirement, he was never able to walk along the outskirts of Culross again and he never managed to visit his favourite place, Oban, for one last time. We want to raise awareness for such a nasty disease as we had never heard anything about it before and to find out its one of the top killers in cancer in the UK was a shock as there is little to no awareness around it. That's why at my Dad's funeral we raised money for the amazing charity OCHRE which is there to spread awareness and support for people suffering with oesophageal cancer. As my dad was well known from his time in the Darts and that he was a Joiner to trade over 400 people attended his funeral and raised an excellent £1,300, which we have donated to OCHRE to help their mission on making more people aware of this disease. I would also like to thank everyone who donated at the funeral, I am sure OCHRE will find an amazing use for the money and I strongly recommend that if you are able, continue to donate to them to help spread awareness. We are going to start a Just Giving page in honour of my Dad and continue to raise money for OCHRE, More people need to be made aware of the signs of Oesophageal Cancer, one of which is something as simple as heart burn. Thank you, Peter Johnstone's Loving Family. Darren has now raised an astonishing £1670 for OCHRE and our work to raise awareness and find a cure for oesophageal cancer. We have found his story to be so moving with so much in common with so many that we hear that we wanted you to hear it straight from Darren. Our grateful thanks to the Johnstone family for allowing us to share their story. Peter’s legacy will help save lives.
‘Heartburn Cancer UK is working hard to raise awareness about Barrett’s Oesophagus and Oesophageal Cancer www.heartburncanceruk.org’ Professor Fitgerald one of our Trustees was recently interviewed on BBC Breakfast - 2018 - BBC Breakfast How to diagnose Oesophageal cancer – it kills 21 people a day. Professor Rebecca Fitzgerald HCUK Trustee talks about her research at Cambridge University: https://www.youtube.com/watch?v=Xng3spuTl-4
Harriet Thompson is planning an amazing event t
From all at OCHRE to our wonderful friends and supporters, our Christmas story is from a very special young lady telling her story in her own words. Sinead Bradley, you are our OCHRE Christmas Hero. Thank you, Kay and your family for your extraordinary efforts. We are so grateful for your words and for your support. May 2018 bring you joy.
BBC Radio 4 - The Eddie Mair Interview, Radio 4 helped diagnose my cancer