Ben’s story; Losing both parents to cancer and recognising the need for earlier diagnosis and personalised treatment plans
Ben ran the London Marathon in 2019, his first marathon, in memory of his mother, Susan.
Susan was very caring and bubbly. She lived for her close-knit family; her husband, son and two daughters. She loved being a grandmother and was a great influence on the lives of her two eldest grandchildren, Niamh and Seren whom she looked after regularly. She also had the pleasure of seeing her second youngest grandchild, Arwin’s first year too.
Ben was away at university when Susan, aged just forty-two, found a lump. She underwent a unilateral mastectomy, chemotherapy and radiotherapy.
Seven years later in 2010, she developed a cough and was finding it difficult to breathe. Doctors initially assumed it was just that, a cough, until in March 2011 she was diagnosed with secondary spread to the liver which had caused fluid to build up around her heart and lungs. Susan was aged just fifty years old.
During chemotherapy, Susan would suffer from exhaustion and nausea. Depending on the type of chemotherapy, these side-effects would last anywhere from a few days to over a week. During one of these times, she was resting on the sofa when Ben came in to tell her that he had just got engaged to his now wife. Despite her exhaustion, she found the energy to jump off the sofa in excitement at her Son’s good news.
Ben was due to get married in 2013 and it was suggested that they bring the wedding forward because the lesions on Susan’s liver were severely affecting its function. Her oncologist put her forward for a trial drug, aimed at treating secondary spread to the liver. She was accepted on to this trial which reduced these lesions dramatically. After this, she was put on to hormone-based treatments which the oncologist felt she could have been on for a long period of time but after six months the cancer receptors converted from oestrogen receptive to protein receptive which meant her treatment had to change once more.
In total Susan went through eleven different types of chemotherapy and quarterly MRI scans to assess the progression of the disease.
Despite the trauma of ongoing treatment Susan always kept a smile on her face, never missed a family get together and continued to look after her grandchildren. Although there were times when illness made looking after her grandchildren impossible, which upset Susan greatly.
Susan attended a support group for a short while, but her personal experience of this became emotionally and psychologically upsetting. A couple of people she met there passed away and on the other end of the spectrum, ladies celebrating their remission also forced her to confront her own mortality.
Instead, Susan found strength in offering support and she would spend time talking other ladies through their own diagnosis and treatment journeys.
In 2015, a lump was found on her spine. Her medical team were unsure whether it was a cancerous tumour or a cyst due to a weakened immune system from all the treatment she had undergone. For confirmation, a scan was sent to a specialist in Oxford who requested that she be blue-lighted there for an emergency operation. The cyst would have burst within 24 hours, leaving her paralysed from the shoulders down.
The emergency operation went well, but her overall health continued to decline. Her liver function started to decrease once more, and fluid began to build in her abdomen.
In 2016, the family organised a big bash to mark five years since her secondary spread diagnosis. She was surrounded by her family and friends and even though she was in a lot of pain, she never let on.
Treatment ceased in October 2016. Susan remained strong despite this news; she cried once and then steeled herself, not allowing herself to dwell on it. Ben vividly remembers the day that she told him that there was no more treatment available to her.
Susan was admitted to hospital for an infection which her medical team were able to get under control and she moved to the local hospice for further care.
In a tragic turn of events, the day Susan was due to return home, Ben received a phone call to say that he needed to get over to the hospice as soon as possible as Susan had contracted pneumonia and she was deteriorating rapidly.
Susan passed away at the age of fifty-five on Thursday 17th November 2016, from sepsis caused by pneumonia. A shock for her family who were hopeful that she could return home that very day.
Alongside his sister, brother in law, sister in law and wife, Ben set up Suzie’s Circle. Under this name, Ben, his sister and brother in law ran to raise funds for several breast cancer charities in Susan’s memory.
Earlier diagnosis & personalised treatment plans
In late 2018, Ben’s Dad, Kevin, was diagnosed with pancreatic cancer and so Ben applied to Pancreatic Cancer UK and to Against Breast Cancer for one of our London Marathon charity places. He accepted the place with Against Breast Cancer only to be offered the same by Pancreatic Cancer UK days after. Ben was in a conundrum as he was unsure who to run for. He asked his Dad for advice who, being just as family-orientated as Susan, quickly said ‘It is about your mum, you need to run for your mum.’ He wanted Ben to keep Susan’s memory going adding that, for him, research funded into one type of cancer may have implications for another type of cancer.
During his own treatment in hospital, Kevin met Susan’s Oncologist who told him that to this day he still uses her as an example to his current patients. To add to this heart-warming expression of admiration for her strength and determination, he was able to recall her hospital number from memory. Such testament to a remarkable woman, whose memory lives on not only in her family and friends’ hearts but in the hearts of those she met throughout her fight against breast cancer.
Just nine weeks after diagnosis, Kevin sadly passed away. His absence at the London Marathon will make the event particularly emotional for Ben. ‘He was always there for my running. This is my first marathon which I initially planned to do in memory of my Mum, but it will also be my first run without my Dad.’
Having lost both of his parents to cancer, Ben sees the need for earlier diagnosis and more personalised treatment plans, catered with not only the timing of administration in mind but also the use of more targeted and thus effective drugs. More understanding and public awareness of the types, stages and aggressiveness of cancers he feels are also paramount to patient’s outcomes.