Trustee
With a varied background in senior management recruitment, mission critical software sales and the fitness industry, Mandy is now retired and serves as a panel member with North Bournemouth Crime Prevention Panel. Working closely with a fellow panel member, who was a great friend of her late husband Paul, she continues to assist with the work that they both started, the MySafer project (an information and signposting gateway for the communities of Dorset). She has been a member of the Facebook community Bowel Cancer Support UK since September 2020, which she joined because of her husband’s Stage IV diagnosis, and became an Administrator shortly after (also admin for some sister groups). She volunteers as a ‘Lived Experience’ volunteer at the cancer unit of her local hospital.
My husband Paul was diagnosed with Stage IV cancer in 2017. He was (outwardly) fit and healthy, going to the gym 3 or 4 times a week and playing squash every Saturday morning, as he had done for years. One Saturday he came home early and explained that he had felt ‘exhausted’ around 15 minutes into the game and couldn’t continue. He went to his doctors and was found to be anaemic (which is unusual in men), so was sent to have both an endoscopy and colonoscopy. In the meantime, the tiredness increased. He went from smashing spin classes (some of which I taught) to getting out of breath climbing our stairs.
When he was originally diagnosed, it was already Stage IV as it had broken through the bowel walls. Subsequently we would find that it had metastasized to his liver, but at this initial point the object was to operate on the bowel and take away the tumour there. The operation was successful and chemotherapy started to ‘mop up’ stray cancer cells.
Paul was in remission in 2019, when we took part in a sponsored walk of parts of the Great Wall of China, raising money for our local cancer unit at Royal Bournemouth Hospital, subsequently part of University Hospitals Dorset (UHD).
At the end of 2019 we were advised that there were metastatic cancer cells in his liver. He went through chemoembolization to the part of the liver where there were most tumours, the idea was to take away that part of the liver. He subsequently had a liver resection operation at Southampton Hospital. He also had intraoperative radiotherapy (IORT), which is radiation therapy administered during surgery. Following this he was back on ‘mop up’ chemotherapy which did appear to grant a period of remission.
Subsequent scans later revealed that the cancer was back in his liver, the largest tumour on the site of the metal clips from the resection operation and on the hepatic vein with no clear margin for another operation. There were also mets to his peritoneum which is a membrane that lines the inside of the abdomen and pelvis. There are only a few centres of excellence in the country to tackle peritoneal metastasis, one being Basingstoke and another Christies in Manchester. Although referred to both by his oncologist at Bournemouth, and after contacting a specialist surgeon in Manchester, we were told that because he had liver and peritoneal mets (rather than just peritoneal mets) that in the timeframe he would have to come off chemotherapy for a peritoneal operation Cytoreductive Surgery (CRS) followed by Hyperthermic Intraperitoneal Chemotherapy (HIPEC), the liver tumours would grow rapidly.
A decision to instigate palliative care was taken. Although, initially, this sounds scarily like ‘the end’, it is, in fact a means of improving quality of life and managing symptoms.
In September 2020, having combed the internet for ‘sensible’ forums from which to gain advice, I found Bowel Cancer Support UK’s Facebook page. Having seen some ‘horror story’ forums online, it was refreshing that this group was well run by people who had (or have) Bowel Cancer, it was factual, respectful and empathetic not only to patients but to family and friends of patients. In time I was asked if I wanted to be an administrator on the group which was a role I was happy to take on (I subsequently became an administrator on the group’s sister page for palliative carers).
Not a day went by from the original diagnosis that we didn’t research and look at everything possible that we could do. We, in her own words, bought to her attention and taught his oncologist things she didn’t know. We found out about a targeted cancer drug bevacizumab (trade name, Avastin) from a story in a newspaper and an appearance on TV of two separate people that, at the time, had had to fund their own access to the drug solely and without help. The drug blocks a protein called vascular endothelial growth factor (VEGF). By inhibiting VEGF the drug stops tumours from forming new blood vessels and this deprives cancer cells of oxygen and nutrients and slows down cancer growth.
Avastin was not approved by NICE (National Institute for Health and Care Excellence) for use in bowel cancer treatment at the time (this has subsequently changed) and so it had to be paid for privately. Initially the cost was prohibitive, but after the drug’s patent expired in 2020, the race was on to get the costs to be lowered. Sadly it was (and still is) a ‘postcode lottery’ depending on what health authority a patient was under.
We campaigned, with a petition to Parliament, to get NICE to reassess the drug and or biosimilars for use with bowel cancer treatment. We instigated a piece in the Metro newspaper, to get the cost down. We had input from other cancer patients around the country, the most recognisable of which was Deborah James (Bowelbabe).
We were successful in obtaining (with the help of our Oncologist) a considerable reduction in cost to patients under UHD care, this not only benefited Paul, but countless people throughout the whole of Dorset. His oncologist told us that we had made a huge difference in what she was able to prescribe.
Sadly, in mid 2022, Paul (who was on Folfiri and Avastin at the time) was taken off medication because of a stomach bleed that landed him in hospital for 5 days. Post this happening he also needed to have a stent fitted in his liver as there was a blockage that was causing swelling of the abdomen and legs. There were still covid precautions being observed in the hospital (because there had been cases and cancer patients are immuno suppressed) and so he didn’t receive much in the way of exercise/movement physio. During that time he lost a lot of muscle tone and suffered from odema which I believe was the start of cachexia (a condition marked by a loss of more than 10% body weight, including muscle mass).
Paul came home and we were provided with wonderful services by our local hospice that meant Paul could be comfortable in his own home.
Paul passed away in September 2022.
After Paul passed away it was too difficult for me to ‘see’ other people’s pain. I left the group for a number of months to reflect on what I wanted to do. Eventually, it seemed to me to make sense to go back to the Facebook groups and help in any way I could. Subsequent to doing that, our local hospital was looking for ‘lived experience’ volunteers for a cancer pilot they were running. Most of the people who had volunteered were ones who had been treated for cancer at the hospital. Given my ‘different’ perspective they felt my experience would be very useful. I volunteer one day a week at the Cancer Hub, Royal Bournemouth Hospital. My role (alongside a Cancer Support Worker) is to listen to people’s situations (this could be patients, family, friends, carers) and, if needed, help people get referrals to services or information that will help them. It is tough to see (and hear about) people’s circumstances surrounding cancer, but it is also incredibly rewarding.