I mentioned Esther, one of the PCUK volunteers, previously in 36. Can I have a Slice of Passion Cake with that Artillery Shell The brief summary, that she gave me, of her story left me open mouthed. I went on to interview her and this is her full story, in her own words. This is the story that I continue to think about, more than any other. Here is Esther’s story.
Esther is in her late thirties, with a quiet but friendly demeanour which hides her determination and strength of character very well. Simon, her partner, was a white male in his early forties. Esther and Simon had been together for nearly fifteen years and she had been working for a leading cancer charity five months before Simon started to complain of backache. In some ways she believes it was fate that she was offered the job, not knowing what was just around the corner.
In early summer 2016, Simon had begun to feel a bit more tired than normal and would have afternoon naps occasionally, Simon was regularly at the gym, so put it down to that. Towards the end of August / start of September 2016, Simon began to complain of back pain. At the time he was helping Esther’s brother with some house renovation. Sometimes the pain would be more noticeable and Simon would need to take a rest period during work. He eventually went to see his doctor and was given some painkillers with the doctor believing the pain was caused by sciatica. The Sciatica is the longest nerve in the body, running from the lower back down and buttocks down into the back of the legs to the feet. Pain occurs when this nerve has pressure applied to it or it is damaged. These did not give any pain relief. So, a couple of weeks later he went back again and got some additional stronger painkillers, they didn’t work either. He had been prescribed Tramadol, Naproxen and Amitriptyline. Despite these strong painkillers, the pain was starting to wake him up in the night and he would have to get up, the pain was so bad and unrelenting, he wanted to go to A&E, but didn’t think it warranted an emergency. At this point they didn’t know the seriousness of the situation and just assumed it was a very bad case of what the doctor has said – sciatica.
Come October, Simon was starting to lose his appetite and the weight began to drop off slowly, and the pain was still not under control. In November the pain was still so extremely bad, the doctor referred Simon to an orthopaedic specialist. What was strange was that Simon had been looking after his brother-in-law’s cat. The cat would never sit on anyone’s lap, but lately he had constantly been sitting on Simon’s lap – could he sense something?
One day Simon said to Esther that the pain had begun to spread round to the front of his hips as well. It was at this stage that Esther was beginning to think something wasn’t quite right and suggested that he should get a blood test done. She had no idea what they would be testing for, and she certainly didn’t know a thing about prostate cancer.
Simon had the blood test done on November 22nd 2016 at the doctors. The pain had now been going on nearly 2.5 months. The day after the blood test was Simon’s appointment with the Orthopaedic Specialist. He said they wouldn’t give him any treatment until they did an urgent MRI scan. He also mentioned the doctor had his blood test results and wanted to see him to discuss the results. The specialist was unable to discuss the blood test results with him.
The doctor called on the 24th November asking if Simon could come in to discuss the results. They said some markers in his blood were high. One of these markers was the Alkaline Phosphatase (ALP). This is an enzyme in your blood that helps to break down proteins. The alkaline phosphatase test (ALP) is also used to help detect liver disease or bone disorders.
A normal reading is between 30 and 130. Simon’s ALP reading was 847, and at its highest it would reach 3833.
Although not told at the time, Esther was to find out at a later date, they thought that Simon had Leukaemia. Based on that reading the doctor wanted to do a bone marrow biopsy. This was done within 5 days and Simon said this was one of the worst experiences of his life. The result took nearly two weeks. By this time Simon had huge bruises coming up his arms, and he was feeling pain all over his body and starting to get throbbing headaches, he was very tired, sleeping a lot more, frail and struggling to walk.
December 1st 2016 and the results from the bone marrow biopsy showed there “were changes in the spine but they were not sure if this was the primary or secondary site. They had their suspicions about what it could be, but they did not tell them at that point and another MRI was ordered to scan the pelvis. He had now been prescribed Morphine for the pain. December 12th 2016 and Simon was phoned by doctor to say he needed another blood test to specifically test his PSA.
Three days later on the 15th December 2016, Simon and Esther were called to the doctors again to discuss the results. Simon was given the devastating news that he had prostate cancer, stage 4 and incurable – at the mere age of 43. Stage four is where the cancer has spread or metastasized from the prostate and has reached other areas of the body. It had spread to Simon’s bones and this was the cause of Simon’s original pain. That day their lives changed forever.
Simon’s PSA was 539. As a reference my PSA was 11.5 just before my radical surgery. The normal range for someone of Simon’s age would be under 3.
Simon went on to have a multitude of scans and they discovered that the cancer was everywhere. It was in every vertebrate in his spine, his hips, pelvis, ribs, legs, shoulder. In the doctor’s words “no bone has been spared.” Common places for prostate cancer to spread to are the spine, hips and pelvis.
On the 21st December 16’ Simon had an appointment at the hospital to talk through his results and what treatment was planned. By now he could barely walk, he was really, really struggling. He could not lift his legs – he had to lift them with his hands. He has lost 2st in weight since October. However, once there they decided that Simon looked very unwell – fatigued, pale and they thought that he might need a blood transfusion. He was admitted. They conducted scans and tests. They were to find that he also had a subdural hematoma. A subdural hematoma is a collection of blood outside of the brain, within the skull, normally caused by a severe head injury. As the blood accumulates pressure on the brain increases. This was why he had been getting the intense headaches. If this pressure is not released it can lead to unconsciousness and death. Simon’s hematoma was likely caused by the prostate cancer and the fact his blood platelets were low – his blood was not clotting. Hence the bruising on his arms. It was touch and go as to whether Simon would pull through. However Esther would not find out this information until a year later. He had several blood and platelet transfusions.
Simon remained in his local hospital for 2.5 weeks over Christmas 2016 and New Year 2017. The local hospital were liaising with a specialist London Hospital, who had originally wanted him to be transferred for possible head surgery, but with a bit of toing and froing they decided against it because of the extent of disease.
“It wouldn’t be in his best interests”.
Eventually they managed to stop the bleed. They started him on hormone therapy (Zoladex) straight away in hospital but needed to wait until he was strong enough to have Chemotherapy. Having chemo upfront with Hormone Therapy is supposed to help extend life. Simon was discharged from hospital on January 6th, 2017.
Chemotherapy started on the 14th February 2017. He received six cycles of Docetaxel, which finished on May 31st. His fatigue increased as each session went on, lost body hair, veins hurt a little but other than that he tolerated it well. Unfortunately, between chemo session 5 (8th May 2017) and 6 (29th May 2017) his PSA began to rise again from 18.8 to 23. 18.8 was the lowest his PSA ever got down to. This was another sign that this was an aggressive form of cancer. The oncologist was not concerned and said fluctuations can happen after chemo. By the middle of June Simon was still not feeling great, so Esther pushed for another PSA which was done on the 16th June 2017. Simon’s PSA had now increased to 32. The oncologist was still not too concerned.
July 5th, 2017 Simon was feeling unwell and running a high temperature, he was admitted to hospital had antibiotics and fluids through a drip and discharged later. After speaking to the CNS they thought there was a possibility of prostatitis, so was put on antibiotics. Still not feeling well a few weeks later, Esther pushed for anther PSA test and on the 25th July Simon’s PSA had now risen to 50.
3rd August 2017, Bicalutamide was added. This made him feel very unwell and eventually stopped this on Sept 24th. He was also prescribed more antibiotics for the possible prostatitis.
From the start of September Simon started to go downhill slowly, his appetite started to decline, he struggling to walk again. Once again, Esther pushed for an PSA test and on the 25th September the devasting news came that his PSA had risen from to 444 in just 9 weeks. (last test was 50). He needed to have an urgent CT scan on the Sept 28th to rule out spinal cord compression – this thankfully was clear. Simon’s pain started to increase rapidly, and the doctor was called out to the house on 30th September. All the doctor did was just increased the morphine and didn’t really look over him properly. With no improvement on the 1st October, Simon was taken to hospital by ambulance, where he were told to get his affairs in order.
They had no idea the end may be coming. His PSA had now jumped to 547 in 6 days.
On October 2nd 2017 at 01.50am Esther got a call from the hospital to say she needs to get there because Simon had taken a turn for the worse. The hospital is only a fifteen-minute drive away. Unfortunately, she was not to make it, Simon passed away at 02.12am. Esther missed him by three minutes. Something she stills struggles with. So from diagnosis to death was just nine and a half months.
Simon’s only heightened risk indicators he had were other cancers in the family. Simon’s mum had breast cancer and is still alive, however his sister died of breast cancer aged just forty-three and his dad passed away from liver cancer.
Simon was meant to have genetic testing specifically for the BRAC 1 and 2 gene, but he never received the forms before he passed away due to the incompetence of a London hospital. Another fact Esther struggles with.
I asked Esther if it ever gets easier.
“Not at the moment. I don’t think it ever gets easier. You just somehow learn to live with it. What we, but mainly Simon obviously went through in such a short space of time, I just have so much admiration for him, he dealt with it with such dignity and tried to protect me along the way. I love and miss him every single day.”
My final question to Esther was, what is the one thing she would want someone to take away from this story.
“Seek help and do your own research so you know what you are dealing with and what questions to ask. Do not be afraid to challenge the doctors or oncologists if something does not sit well with you, don’t be afraid to get a second opinion if you want to. The more I read, or hear on social media, the more I see men in their forties getting prostate cancer and it’s not just men at higher risk i.e. black men. This does affect younger men, it’s not just an old man’s disease.
We need to raise more awareness of the third biggest cancer and get people to talk about it”